Today’s on Get Social Health we’re talking about a project called My MG Sole. It's new collective art project designed specifically for people with Myasthenia Gravis, a rare autoimmune condition. The goal of the project is to help people in the MG community defy social distancing by uniting as a community online. In this time of intense social distancing, the separation of those with chronic illnesses, like MG, from their family, friends and community - who understand what they may be experiencing - can feel more like extreme social isolation. 

The project is sponsored by Argenx, (Are Gen X) a Boston based biotechnology company developing treatments for severe autoimmune diseases. With me here today are

Annalise Hammerlund, an Expressive Arts Therapist and Mental Health Counselor from Grand Rapids, Michigan. Also joining the podcast is Susan Woolner. She is the Neuroscience Patient and Caregiver Support and Community Manager for Mercy Health Hauenstein Neurosciences

For all my Digital Health listeners, I wanted to share this interview with Jen Goldsack of the DiMe Society from the "People Always, Patients Sometimes" podcast. This podcast is a production of Spencer Health Solutions (full disclosure: my day-job!). Our podcast focuses on the innovators, thought leaders and patient influencers who are demanding change now in clinical trials

The Digital Medicine Society is a group of individuals who are committed to innovating and transforming how digital apps, medical devices, software and processes can positively impact healthcare and clinical trials. Since Jen handles all my questions so well, it didn't make sense to repeat the same interview for Get Social Health.

Here is the interview and transcript from my interview with Jen Goldsack about the DiMe Society on the "People Always, Patients Sometimes" podcast.

The DiMe Society – Jen Goldsack

It’s time to discuss the digitalization and democratization of medicine so we invited Jennifer Goldsack to join us on the “People Always, Patients Sometimes” podcast.  Jennifer is the interim executive director of the DiMe Society, pronounced like the coin, an abbreviation of the Digital Medicine Society.  In our discussion, Jennifer spoke about the “trans-disciplinary nature of digital medicine as a field” and how, without professionals from every field at the table, the healthcare community will make mistakes and under-deliver on possible treatments for the individual.  As a nonprofit, Jennifer explained that “we do welcome all comers” at the DiMe Society – unlike other organizations, the DiMe Society charges individuals only $50 for membership, creating a low barrier of entry and ensuring accessibility to everyone.

The DiMe Society was created with the mission to facilitate interdisciplinary collaboration between professionals within the global healthcare and technology communities in their research, teaching, and promotion of best practices in medicine.  The DiMe Society believes that everyone has something to contribute to the advancement of medicine, from white-hat hackers, engineers, and clinicians to citizen scientists.  Founded earlier this year, the DiMe Society already has around 700 members from 24 countries after only 5 months of opening their doors.

To learn more about how Jennifer and the DiMe Society cultivate collaboration in the field of digital medicine, click on the link and listen to this week’s episode of People Always, Patients Sometimes, hosted by Janet Kennedy.

 

Health literacy is a relatively new term that is getting a lot of attention, but what does it mean? Does it have to do with reading ability or reading comprehension? Is it the responsibility of the healthcare provider or the patient? October is Health Literacy Month, so we're going to learn more about the meaning of health literacy from Lori Hall, director of global health literacy for Eli Lilly on Get Social Health.

On the start of Lori's career: "In my career in nursing, I started out in the newborn intensive care unit. It was a wonderful opportunity to make a difference every day for patients and parents have these tiny little newborns. Although I didn't know about health literacy or health education then, I think it really had a strong presence even in the mid-eighties when I started my career. And that's been a common thread throughout the roles that I've had in healthcare. I look back at that common thread often now and recognize how I've been able to pull something from each of those experiences. That served me really well today in my role as the advisor of global health literacy."

More information:

Health Literacy - Extruded Cornstarch Emulsifier?

Health Literacy - Medical Information

Health Literacy Month

Lilly Trials - Word of the Day

Roundtable on Health Literacy

Contact Lori

LinkedIn

ePatient Dave - Part I

I'm honored to have Dave deBronkart on the podcast today. He is the original "e-Patient" and has a lot of stories and interesting projects to share with us today. As a matter of fact, so many interesting projects that we're going to break this into a two-part discussion, so join me for our conversation with e-Patient Dave on Get Social Health.

Podcast Transcript

Announcer:                      00:22                   Welcome to Get Social Health, a conversation about social media and how it's being used to help hospitals, social practices, healthcare practitioners and patients connect and engage via social media. Get Social Health, brings you conversations with professionals actively working in the field and provides real-life examples of healthcare social media in action. Here is your host, Janet Kennedy.

Janet:                                00:48                   Welcome to the Get Social Health podcast. What an honor for me to have Dave deBronkart on the show today. He and I met through the Mayo Clinic Social Media Network and have run into each other a few times at healthcare conferences. It is such an honor to have him here. He's known on the Internet as ePatient Dave. He's the author of the highly rated "Let patients help patients" engagement handbook and he's one of the world's leading advocates for patient engagement. After beating stage four kidney cancer in 2007 he became a blogger, health policy advisor and international keynote speaker. Dave, welcome to the podcast.

Dave:                                 01:25                   It's an honor to be here. That's what healthcare needs, so I'm really glad I'm quite, you do a good professional job of it.

Janet:                                01:33                   Thank you so much Dave, and I'm really thrilled to have you here. If anything, to give you an hour to sit down in a chair and just have a conversation because when I looked at your website and all your speaking engagements coming up, I was absolutely blown away with how active you are. You are talking to a lot of people these days.

Dave:                                 01:52                   Well, do you know I can't sit home and be an evangelist. You've got to carry it out into the field. And as it happens, through one of the strange quirks of the universe, when I accidentally found myself, it was actually 10 years ago this month, that I found myself on the front page of the Boston Globe because of a blog post I'd written. People started asking me to give speeches on the topic and I had learned how to do that when I worked in marketing. The last thing I ever would have expected coming out of cancer is that it would turn me into an international keynote speaker.

Janet:                                02:26                   I love that. I love that you felt that this is a mission worth all of your time, that you really wanted to commit to that. I know that we're going to gloss over your early story because I think a lot of people know who you are, but what you represent an almost more than any other patients we've spoken with is that you're a mature individual and you have a length of view that is longer than many of my guests. A lot of ePatients who are involved and engage these days tend to be in there like twenties and because they have always felt that social and digital was a way to tell their stories. You and I represent more of the boomer generation.

Dave:                                 03:07                   Uh, we're not so forthcoming.

Janet:                                03:09                   I'd love to get your perspective on this 2009 - 10 years ago when people first started you to speak as an engaged patient and an empowered patient. What's happened since 2009 to today?

Dave:                                 03:23                   Well, you know, I've just been reflecting on this because 12 years I got the diagnosis to nearly died, but God cured within a year. That was 2007 in some speeches. Now I customize every speech for the audience, depending on what they're up to. Sometimes the best message is if you live long enough, things really change. And what's important about that is people tend to achieve a certain level of seniority or accomplishment in their profession, whatever it may be. And they feel like, dude, I got this, I'm good at this. And then 10 years go by and all of a sudden what was important before isn't important anymore. And you've got youngsters nipping at your heels and you got to think it all out again. So consider in the middle of my treatment, Apple introduced a product called the iPhone. You know, and you think that the world might have changed a bit since then.

Dave:                                 04:20                   So, well, and that's a, you know, apps and everything. And this is why in my career in business, I was involved in quality improvement projects, countless meetings over the years with different companies about rethinking how we go about doing things, what are our customer's priorities and so on. So I naturally, when people started asking me to talk about how care, particularly patient engagement, I looked at it through that Lens. So what has changed in 10 years, 12 years and years since the front page article is, I've learned a lot more about what's changed in the industry as a whole. A lot of people have been trying to do patient engagement, patient empowerment, and a whole lot of people have been pushing back. But it turns out that a lot of big reason for that, you can't do patient empowerment and engagement with any sort of completeness unless the patient has access to the medical records. And there has been feeble lip service in the past because the technology didn't support it. But you know, the biggest change in what it looks like if you look out to the horizon is the technology is coming along and the culture is finally coming along 10 years later to make it possible for us to get all of our information.

Janet:                                05:50                   And that is really the foundation of helping patients knowing and participate in their health journeys, right? They have to have access to what the doctors are saying about them and what the doctors are cataloging about them, correct?

Dave:                                 06:04                   Well, in general, yes. Now, not everybody one flat. All right. Because the whole principle of patients that are care is that people are different and you can't treat everybody the same. It's, I've found it's useful to point out to people, especially if it's an audience that is in the younger parents category. Like my daughter is, I have a five-year-old granddaughter, excuse me, 5.8 years old.

Dave:                                 06:32                   Her mother is a science teacher, she is 5.8 years old. Anyway, people who are recent parents, no, you can't treat all little kids the same. Some of them wanted to take things slow and easy, somewhat excitement and so on. Some patients during my illness, the nurse practitioner over men, that's just my case said that she used to work in pediatric oncology and sometimes the patient couldn't articulate what was important to them. First of all, not everybody cares about seeing what's in their health records. My parents are polar opposites on that. My father just said let them do their job. It's my mom is just on top of everything checking to make sure they've got her allergies and medications right and everything. My point is it is perverse. Take, keep people like patient in the dark about something and then go around saying they wouldn't understand. They don't know anything about this.

Dave:                                 07:33                   You see my point? It's exactly, there's so many parallels between the ePatient movement than the women's movement. When I was a little kid, people were always making jokes on TV about women drivers. Well, women were not experienced drivers in the early 1950s generally, you know, the remedy was not to keep people in the dark. The remedy was to get them involved and make them experience. And that's my point with patient access to the medical record. It's really is unfair. It's an unfair burden to expect the providers to be on top of everything because there's so much stuff in a chart, it really is much better to let patients help.

Janet:                                08:18                   So are you saying that, and I agree with you totally, I love your analogy too. Hey, nobody's going to get to be a better driver unless they get to drive. No one is going to appreciate their health records unless they see their health records. But are you saying that this is literally just having access to the EHR, whether you choose to engage with the electronic health record or not, is the point or is there a deeper level of information you think that patients need?

Dave:                                 08:42                   That's an excellent question. I have a lot of conversations on this subject and that's a razor-sharp question. My goal is not to make people do anything a particular way. It's to help healthcare achieve its potential. I am deeply grateful to the highly skilled, trained, educated doctors, nurses, assistants, everyone who took good care of me when I was dying and in my business troubleshooting mindset. When I hear all the stories about medical errors or somebody didn't know about a side effect or just there are so many ways that the flood of information out there might not get to the point of need at the moment of need and what I want. First, we troubleshoot. We say, wow, there is too much information for anybody to know everything, so now what can we do? Some people say, well, it's the doctor's job to know everything.

Dave:                                 09:50                   Well, well, I know you and I were immersed in this, but the general public has not had this OMG moment of realization yet. It's funny if the ePatient expects the doctor to know everything, it's a recipe for mischief. The same is true if the doctor expects to be treated like they know everything, you know? And that's so this is why this is a culture change, you know, in the women's movement. Well, what it taught to change mindsets and we thought we had it solved, but oh boy seems that it's an ongoing project. What it took to change mindsets was not just changing men's minds, but women's minds. Also long ago, early in my career, I had a woman who worked for me, literally said she couldn't do something. She said I'm just a girl. Like you see, you are a level three employee, which is a high level in a technical profession. Yeah. So it is a culture change.

Janet:                                10:53                   All right, so what are the things you talk about as, as a goal or a priority on a professional side is that you really want social change and I think that's really the point that you were just making. But how do you envision social change helping healthcare and making healthcare easier for patients?

Dave:                                 11:14                   Well, you know, just this morning, a patient blogger named Aaron Gilmer, Gilmer health law is her Twitter handle, posted something magnificent. One of the best achievements, I think in patient engagement with empowerment that I've ever seen. She has, an extreme mix of psychological and trauma and medical conditions and so on. She created two documents that are now in her chart that express what heart concerns are about being taken care of, how past traumas affect various things, what they should know, what she does in order to deal with it. And here's how I express my worry if I've been triggered. And so on. The first hospitals she gave it to, they looked at it and canceled her surgery. They basically said, get outta here. And she didn't bring it up again. She has a great blog post about it. We can link to it in the show notes.

Dave:                                 12:18                   She didn't bring it up again. And then several years later, just recently she got additional care that happened to be in part of the same system. They ran across this and they said, thank you so much. And they have been using what she had expressed. They've been using those methods of talking with her and are you okay with this? And so on. See that's social change. In the old view, the doctor knows everything and those what you're supposed to get economically. This can be a major issue because in US healthcare, so much of what care providers are allowed to do is tied to reimbursement issues and there can be financial pressures. It really takes commitment as a caring profession to overcome that and in the new view, it really is important what matters to the individual patient and people are committed to care as a separate issue from the science that's being administered to the sick person.

Janet:                                13:27                   Alright Dave, I'm having an epiphany here and I don't know why this never occurred to me. Although I will say I have the benefit of being a generally healthy person. I've never really had any serious health issues and a visit to the doctor will solve my problem. So I'm very, very fortunate in that regard. However, it never occurred to me that as a patient do I even have the right to add things to my own file and why we should allow patients to submit a patient statement. That kind of sets it up, especially if you're going from physician to physician, you'd have a complicated thing. Wouldn't you rather be able to say, here's my - just what Aaron Gilmer did - here's my story, here's my whatever. So that as you get from a specialist, to specialist, to specialist, they actually read just a paragraph about who you are as a person, not who you are as a series of medical diagnoses.

Dave:                                 14:16                   Absolutely. And I imagine that in your work, I mean will you manage client relationships and your business? You need to understand what's important for them, right? You walk in, if you get on a first phone call with everyone and you just feel out the same thing you said to the last 12 people and here you go. Like it or not, I'm going to give you my off the shelf solution. Well, you don't like that. What's wrong with you? Right? You would think that the doctor knows what to do in every visit. But in today's world, you've got to ask yourself what, so what's the difference between what you do in service to your clients and what a physicians, MD, nurse practitioner - by the way, it was a nurse practitioner who first told Erin that he found that in her chart and he was so grateful for it.

Dave:                                 15:10                   That's a whole separate discussion of how nurse practitioners generally have more of a cultural license, so to speak. Figuratively speaking, to just plain be caring professionals. What are the cultural reasons why we - in healthcare - we wouldn't start with finding out what's important. I mean, my doctor, the famous doctor Danny Sands, he was the one who in 2007 when it turns out I was dying. He, was the one who you have a good patient community and he didn't say stay off the Internet. He showed me where to go on the Internet.

Janet:                                15:52                   Oh wow. He's unusual.

Dave:                                 15:52                   Well that's, that's modern. That's modern today. He wears, I just saw on my last clinical visit with him, he has a button on his wife coat that says what matters to you with a question mark, what matters to you? Because you know, you prescribed somebody, okay, you got to eat better.

Dave:                                 16:17                   You gotta do this, you've got to do that. That's all external shut up and do what I tell you. Unless it is grounded in me one thing, some form of a better life, to know that somebody really would love to live to see their grandchildren get married versus my bucket list has one big item. It's a month in Hawaii. You know? Then any recommendation for exercise or behavior change or anything. And that's, that's the point these days. We have so many options, treatment options and so on. All proper respect and appreciation to physicians who in today's economic environment, we'll take that extra time because they don't get paid any more for being that kind of a good physician.

Janet:                                17:10                   Hmm. Okay. Dave, I want to ask your perspective on something. The world I'm in where, again, as a fortunately healthy person and in my podcast, the work I do tends to be with startups, with new companies, with digital health folks, with young people who are inventing apps and it's a very exciting world. However, I know you've spoken to physicians and healthcare practitioners in the hospital environment and one of the things that I feel is happening and I'm looking to you for clarification or validation is what's up with the medical schools? Are they focusing on integrating some of these new ideas and changes or are still training physicians the same way they always did? Therefore, we're just going to have one more generation of folks who want to say do as I say,

Dave:                                 17:57                   Well, surprise, surprise. There's a spectrum. Whoever would have thought that there would be, we know social change takes generations, right? The conventional wisdom that I've heard physicians express to each other is, you don't want to be the first to do something new and you don't want to be the last, just stay in the middle of the pack. Now, surprise, surprise. That turns out to also be exactly how the curve in high tech innovation; there's to this curve where you have the early adopters, the innovators, then you have the early majority and so on, and then the laggards are the last ones to get into it. Some medical schools are primarily interested in preserving their reputation and their position. They want to do a good job of doing what's well accepted. I don't necessarily fault that. I do think it's a good way to guarantee that you will never be in leadership.

Dave:                                 19:01                   You know, you may be leadership and reputation, but you'll never be leadership and turning out of the next generation of innovative, smartest, best future doctors. Others though new medical schools that come along and the best example that I know of is the Dell medical school at the University of Texas. That has just opened recently. An example of how they're willing to conspicuously differ because there is this thing that some of us learned in high school, high school biology, the Krebs cycle, how energy gets generated. And I don't remember a thing about it. And the important thing is it's always been something that doctors have to master in order to become an MB and then they never ever use it. So why is it taught and why is it so important? Some people think it's just to be obnoxious and make it difficult to get over that hump.

Dave:                                 20:01                   Anyway, Dell medical school's conspicuously said, we're not teaching the Krebs Cycle. We've got better things to do with our time. And similarly there is a great social penalty within the medical community or going after something that is not well established with a larger body of published literature about it. So to get deeply into patient engagement today is risky in that context. People will say, where's the evidence for that? And that's good because once upon a time, you know, just within the last 50 years, it was discovered that doctors were doing a lot of things despite the that it doesn't work.

Dave:                                 20:50                   And that's a whole separate subject. My point is it takes genuine vision and leadership to see that something is the new path forward, even if the literature doesn't exist for it. And some schools are beginning to do that, but not enough. I have begun lecturing to some medical schools. Just as one final hint of that. I opened an email late 2014 and it was an invitation from the Mayo Clinic, from their chief residents to be there visiting professor in internal medicine in 2015 despite the absence of any curriculum or anything of the sort. So I went to, we talked a lot about the future of the role of the patient.

Janet:                                21:41                   Well, I love working with the team at Mayo Clinic. Now I haven't been on the clinical side, obviously I've been on the social media side, but the embracing new ideas and at least let's look at everything and what is it's potential impact is just a phenomenal philosophy that you don't turn your back on it till it's, you know, so proved, it's carved in stone. Dave, you've teamed up with probably one of the most well known medical futurists and medical device testers in the world. Dr Bertalan Mesko. What did you do with him and what is the digital health manifesto?

Dave:                                 22:16                   Well, it's an ongoing thing. You know, and it's funny because this just freaks me out. One of the things that changed, I said if you live long enough, things change. Well, one thing that's happened is I am 12 years older than I was 12 years ago. And that means for instance that my daughter who was just getting out of college when I was sick is now a mid-career science teacher. And I can't believe this, but Bersi is younger than my daughter. And so there we are having these conversations and he's showing me all his digital gadgets and we actually both spoke at a conference. A company had a, an important user group meeting in Chicago a few months ago. We both spoke one after the other and he and I both are thinking in terms of what could we be achieving and what's holding it back. And we see, especially on LinkedIn, LinkedIn is a wonderful place for making connections and so on. But you'll also see in the same way that Twitter became a sort of a festering swamp of rumors and illusions. On LinkedIn, you can see investor type people, Silicon Valley type people getting frothed up about a wrong concept and just the fact that other people are getting excited about it makes it seem like this must be the right thing. So we decided together to publish this manifesto saying, Whoa, step back you guys. Just because something is an amazing new technology. I like to think of it in terms of the Pharma concept, pharmacological concept of what's the mechanism of action by which this new gadget is going to improve anything. You know, so many silicon valley inventions, as well, meaning as they were, turn out to not make any difference or they make a difference, but they don't get commercial uptake and they die.

Dave:                                 24:26                   So we wanted to point out, here are the principles that you need to think about if you want to understand what's happening with digital health, because believe us, something real is happening. I used gadgets, for instance, to overcome prediabetes a few years ago, and everybody, I'm over 60 I'm well over 60 and a bunch of people said, look, people over 60 aren't going to ever change their behavior. It's a lost cause. Those people are ignorant. All right? So we said principals, it's a cultural transformation, not a technological revolution. All right? It's about behavior change. It's not about - see when I, when I got this prediabetes diagnosis, I went out and bought a Garmin wristband and I collected lots of data about my activity and my weight went up. Well. So here's the thing. Information enables behavior change, but it doesn't cause it. What produced weight loss for me and a victory was that I got into the YMCA's diabetes prevention program, which is a behavior change program. Okay? So it's not about having the technology. What's important about that from a business sense for a couple of years, cynics - so you have the enthusiasts on LinkedIn who are blabbing about how exciting this innovation is and then you always have the wave of cynics who come along and say, yeah, you know, where you go ahead and search, buy a Fitbit. You know what you find? You find ads for used ones that have been discarded on eBay. Those are stupid people who say that because somebody buys the Fitbit and they expect it to reverse their prediabetes stupid. And when I say stupid, I mean uninformed, right? It's okay for me. If somebody is uninformed and they admit it, which I do a lot. But if they are uninformed and they go around with their chest puffed out acting like they're smart, that's ignorant.

Janet:                                26:36                   Well I know there's been conversations about around ADHD; that ADHD with med and no behavior modification, you're better off not taking the meds at all. So you have to understand how the medication or how the issue is impacting your body and be able to take action as well as work with the med.

Dave:                                 26:57                   Well. And so now, to switch back to Erin Gilmer's perspective, because all this stuff is interrelated as everything cultural is. One of the first things I did online before the Internet was back on Compuserve. I started out being a discussion leader in desktop publishing and then I became one of the forum managers on the ADD forum back when it was called ADD. And one of the things you found there was that when the people who have the problem, and I still pitch this in speeches today for certain audiences, when the people who have the problem get the ability to express themselves and choose among options, one of the things you find is they may pursue different objectives than the therapists or being told to follow what's in the published literature, so as just one of many examples. We had one guy - and this was 1994 was when ADD was brand new - we had one guy who was a travel agent back in the days of travel agents. Did I mention that things change? And he was getting occupational therapy so he could tolerate sitting at his desk and the other patients in the community said, dude, get a job you enjoy, and he ended up becoming a UPS driver, which was a great job for our hyperactive person. Drive, drive, drive and run to the door, drive, drive, drive, run to the door at Christmas time you get bonuses for productivity. That's rethinking the issue. Anyway, my point is this really is like a seismic shift because if you shift to where you're giving the person who has the problem, permission and information and tools, what they come up with may be different than what was on offer at the hospital. That can be bad news for the hospital, but since the hospital only exists to improve health in the community, it's good for society.

Janet:                                29:13                   No, that's an excellent point, Dave, and I definitely think it's one that hospitals need to hear just because you have a perspective that this, you're going to do this program, you're going to initiate this special effort or this patient initiative. It doesn't mean that the results are expected and you have to be willing to be flexible and learn from what you're doing as well as the patient learning from it.

Dave:                                 29:39                   Well, and what I really hope, I don't want to sound like I'm rejecting doctors. That's the last thing. When I was sick, I did not reject doctors and go read up on herbal remedies. That might work. I went to the doctor, I still go to the doctor, but my doctor welcomes all of my doctors. Welcome me wanting to learn more and ask questions. That's the point. And now you want to know what's really ironic. So I have all these different apps. I have a wifi bathroom scale, I have my diet tracker or I'm counting fat grams, steps, and all of that stuff. My doctor can't see that data because there's big fancy hospital computer doesn't have an interface. So now we're in a world where all of a sudden I have access to a ton of data that he doesn't have. That is an inversion.

Janet:                                30:40                   And so we have to figure out how to get those two things married up.

Dave:                                 30:43                   Perhaps. It may be that he can do his job as well as he needs to without seeing all my data. But we were just approaching, there's a new it technology called FHIR - F H I R - which is just really maturing now after six or seven years of software development that will, for the first time, let people develop products that blend the hospital information, hospitals, plural. And my information from my devices. So there is a world coming where we can truly be partners in the same way that my tax accountant and I can both look at my Quickbooks data. Why as medicine not figured out that that's the best way. Now my tax accountant can coach me to stop doing this. See this over here? That number's too big. Why can't my doctor do that? My whole thing is helping healthcare achieve the available potential.

Janet:                                31:47                   Oh, that's excellent.

Announcer:                      31:49                   You've been listening to the Get Social Health podcast. The show notes are located @getsocialhealth.com to join our healthcare social media journey, follow @getsocialhealth on Twitter and start a conversation.

Janet:                                32:04                   I hope you enjoyed today's podcast with Dave deBronkart. We're going to be talking about some of the projects he's working on and some exciting new things happening in his life in the next episode. So make sure you tune in for part two of our conversation with e-Patient Dave.

Find Dave online:

LinkedIn profile: http://LinkedIn.com/in/ePatientDave

Twitter: @ePatientDave

Have you heard the term Patient Advocate?

How about the expression "not about me without me" in the patient space? So often over the past decades, if not hundreds and thousands of years, the patients have sometimes the least consideration when healthcare decisions have been made. Well, that's changing due to empowered patients who are using social media, online resources and the ability to connect with other people of like situations. Patients now are finding that they not only have a voice, but that voice is starting to be respected and drawn into the healthcare community.

Today on Get Social Health I'm very proud to be speaking to Lilly Stairs. She is a leading voice in the rapidly growing patient engagement field. This will be the first of a number of podcasts that I'll be covering where we'll be talking with patients or about patients and their engagement in healthcare. So join me for a discussion with Lilly Stairs on Get Social Health.

Connect with Lilly:

• LinkedIn
• Twitter

Follow the conversation or drop in at the timestamps below:

Janet: 00:00

Announcer: 01:07 Welcome to Get Social Health, a conversation about social media and how it's being used to help hospitals, social practices, healthcare practitioners and patients connect and engage via social media. Get Social Health brings you conversations with professionals actively working in the field and provides real-life examples of healthcare, social media in action. Here is your host, Janet Kennedy.

New Speaker: 01:33 Hey everybody, this is Janet Kennedy. Welcome to Get Social Health. On today's podcast, I am thrilled to be finally talking with Lilly Stairs. She is head of growth and partnerships at the Savvy Cooperative. We're going to hear a lot more about that in just a little bit, but first I want to set the stage. Lilly and I have known each other through social media for quite a while and one of the things that she brings to the table is the importance of including patients in the discussion online and in the work of healthcare. So whether it's the work she's doing as a speaker or the company that she's with, she really has a fascinating perspective on getting patients involved. And why is she such a strong patient advocate? Because she has battled a couple of very serious chronic health issues and I think you're going to find that really interesting to hear about. So without any further ado, welcome to the podcast. Lilly.

Lilly: 02:31 Thank you for that lovely introduction, Janet.

Janet: 02:35 You know, it's tough when you're really representing well, every part of healthcare. Which hat you put on must be kind of confusing.

Lilly: 02:42 It is. You know, I always, I do joke all the time about how I wear so many different hats and now I have to take them on and off and sometimes they wear them all at once. They've even done a post on Instagram ones where I put a bunch of different emojis on my head representing all the different hats that I wear.

Janet: 02:59 No, that actually makes perfect sense. I appreciate that you're with a company called Savvy Cooperative, and I think it's a fascinating concept. I love the idea of how it came about and I want to hear more about that. But first, why don't we set the stage? Can you tell us all a little bit more about your personal health journey and really how you got to the place you are today in some ways, patient number one, and how you were able to translate that into a life worth living and a career.

Lilly: Oh my goodness. So I never thought that I would end up in health care, to be honest with you. I didn't even know what the term biotech meant. And here I am working hand in hand with the industry, but when I was 19 I actually started having this pain in my left knee and we weren't really sure what it was.

Lilly: 03:51 I had just wrapped up my freshman year of college at Northeastern University in Boston. I absolutely loved it, couldn't wait to get back. I was home for the summer with my family and we went on vacation and I started to wake up every day and my body was achy and I was like, ah, you know, maybe it's the beds. But then I thought, Huh, well I'm in college. I could really sleep anywhere and I, I'd be fine. I ended up getting home from vacation and all of a sudden I woke up one morning and I couldn't move. I was paralyzed with pain literally throughout my entire body, unlike anything I had ever felt before. And My mother ended up having to dress me and feed me because that pain was so severe. And so I started going in and out of doctor's appointments. They were not sure what was going on. They thought potentially it could be Lyme disease or Parvovirus. Finally, we had a doctor who said, and then they told my parents at the time, first that we think Lilly has psoriatic arthritis. And I remember my parents communicated this information to me and I just stood there, speechless, devastated, heartbroken. You know you hear arthritis and you think of your grandmother who just gets arthritis in her hip or her knee. You don't think that as a young, vibrant, 19-year-old woman that you're going to receive such a life-changing diagnosis. And so I decided against the doctor's wishes at that point to go back to school. And I was waking up every morning having to take a hot shower to warm up my joints. Hours before class. I tried to find seats on public transportation and when I was sitting down, but an elderly person got on the train, people would look at me like, why isn't this young millennial getting up for this elderly woman? But little do they know that I'm probably in more pain than that, that elderly woman and so on and so forth.

Lilly: 05:42 And six months after I received that psoriatic arthritis diagnosis, I ended up in the hospital. I was in and out of the ER three times in one weekend with excruciating stomach pain. The doctors didn't believe me. They thought I was faking it, which is, unfortunately, something that happens often in our healthcare system to women. And after I was admitted, they ran a number of different tests. Over the course of a week, I lost 30 pounds, was on 90 milligrams of morphine, and the doctor said, listen, we've got one more test that we can try and if this doesn't show anything we don't know what's going on. And so I, I took this pill that actually took pictures as it moved through my body every three seconds. And it was at that point that they discovered I had bleeding ulcers in my small intestine and they diagnosed me with Crohn's disease.

Lilly: 06:31 And so within the course of six months, I had received two life-changing diagnoses that I would live with forever. I remember pulling up my computer and while I was sitting in the hospital bed and I started typing in Crohn's disease and psoriatic arthritis and what comes up, but the term autoimmune diseases, turns out there are 50 million Americans who are living with autoimmune diseases for point of reference. That's about twice as many as people with cancer. I just remember her being so angry because I had never heard the term autoimmune disease before, but here I was living with two of them and there are 50 million Americans who are in during this unbearable pain and suffering that I've been through and I was just so angry and knew I had to make a change. So I like to say that my truest self was really unearthed in the hospital bed and it was at that point that I decided I'm going to do something about this.

Lilly: 07:22 I'm going to raise awareness for people battling autoimmune diseases. I'm going to help find new treatments. And so I ended up going through over the next couple of years, went through a number of different treatments because it's as an autoimmune disease patient, it's really hard to find one that works. I am very fortunate to say that I've been in medically controlled remission for five years now thanks to the amazing work of the biotech and pharmaceutical just strain. And that led me into my transition into healthcare. I basically was diagnosed at 19 so that was around when I was starting to do ops at an internship and jumped right into healthcare, started working at mass bio, the Trade Association for Biotech and Pharma companies and learned about patient advocacy as a career track when I joined them. And from that moment on, knew that I had to, had to be in patient advocacy. And so that was my transition into the space.

Janet: 08:14 What a fascinating story. Now, these two issues are not related, right? It was just horrible luck that they both happened to you.

Lilly: 08:23 So they actually are related. They're both considered autoimmune diseases and it's, I, I have a friend who says autoimmune diseases are like chips. You can't have just one. And that is the case for many. It's that you'll feel, and there's over a hundred different autoimmune diseases. So lupus, MS, Psoriasis, those are all considered autoimmune diseases and many people who get one often end up getting a second or a third as well.

Janet: 08:49 Oh, well there's something I've learned today. So you've already done your job for the day. Excellent.

Lilly: 08:56 Raising awareness. That's my big goal in life.

Janet: 08:59 When you serve as a patient advocate for a company, what does that really mean?

Lilly: 09:03 Yeah, it's an interesting question. It means something different depending on the company. I think there's an important distinction because there are some companies who truly embody this patient-centric mindset and I really hate the word patient-centric and I think a lot of people do in the industry but its sort of what we're stuck with. If you don't say your patient-centric then people think you're a bad company. It means that you are the person within the company who is championing the patient voice. You are working across teams to ensure that the patient voice is being infused into the work that you're doing and you are fighting at the table. You ideally at a company, you're in a leadership position as a patient advocacy person and you are fighting to ensure that business decisions that are made are what's in the best interest of patients. And so that's really the primary role of somebody who sits in a patient advocacy position. But there are also doing a number of other things. They're managing relationships with the patient advocacy organizations and patient communities and they are helping develop disease education awareness materials to educate on the different medication medicines that they might be developing or supporting, helping offer grants to different advocacy organizations. So there's a lot of different ways that a patient advocacy function within the industry.

Janet: 10:31 So when you were working with Clara Health, you are working with a company that was trying to match up Pharma and clinical trial participants, is that right?

Lilly: 10:41 Yes. It was a multi-sided marketplace there. We were working to, or we are working because I am still a lead patient advisor with them and love the work that Claire is doing, but we're working to connect patients directly with clinical trials and making it easy for patients to connect, which means we're helping them search for the clinical trials. We hold their hand through the process, we call the clinical trial sites on their behalf. We coordinate their travel handle, all of those administrative burdens that a patient would typically be tasked with. And then on the other side, we work with companies to help them recruit for their clinical trials and retain patients. It's in their clinical trials and we take a very patient-centric approach through that because we actually work with patient advocates to help companies think about what their clinical trial protocol looks like and actually help support like have live patients to help support other patients through the process.

Janet: 11:38 All right, and then tell me about making the transition over to Savvy Cooperative. How did that come about?

Lilly: 11:44 It was an incredible opportunity. I've admired Jen and Ronnie who are the co-founders for quite a while now. Jen and Ronnie are notable patient advocates in the space. Ronnie is a cystic fibrosis advocate who developed the largest online community for cystic fibrosis patients and Jen is a juvenile idiopathic arthritis patient. And she has spent her life really dedicated to patient advocacy. She works with the FDA. She got her Ph.D. in human factors research so that she could really bring her perspective and to industry. What they've created is something so special that I am really honored to be a part of because it is a patient-owned cooperative. As these advocates, they were constantly being asked by companies to give their perspective, but what they realized was that yes, we love giving our perspective and it's great that they're asking us, but you know what? We can't offer a diverse perspective. There should be more patients who are giving their perspective and just because there may be not public about their disease on social media, they're a little harder to find, but that doesn't mean that companies shouldn't be actively trying to reach out and get those diverse perspectives. And so that's why Jen and Ronnie founded Savvy Cooperative, and they made the decision to make it a cooperative model, which means that patients actually own shares in the company and share in our profits at the end of the year because they believe that the business model should benefit the patient and patient should be fairly and equitably compensated for the work that they do. And so I couldn't have imagined more of a perfect fit for me as somebody who, you know, my priority is to ensure that we are infusing the patient voice across every aspect of the industry, from Pharma to startups to health insurance. We want to make sure that that patient voice is incorporated early and often. And that's ultimately Savvy's goal. So I, I'm living the dream, getting to work with all of these different companies and, and learning about all of them, all of the incredible work that these companies are innovating on and being able to bring patient experts into to give feedback on that and so that they can iterate and make a product that truly fits an unmet need.

Janet: 14:06 Oh man, that's fascinating. And sometimes I think a lot of people don't realize or I don't know, maybe we should realize that patients traditionally really don't have a lot of money. And yet these companies, Pharma companies, in particular, they're going to be making millions and billions of dollars through selling all the way through to the patient. Yes, via a provider, a physician, a nurse practitioner. But ultimately it's coming out of the patient's pocket in some way. And yet they've had very little economic say and how these businesses and medications have been developed.

Lilly: 14:40 Absolutely. And I mean, and it's, it's crazy to me because in every other industry we consult the end user. If you look at consumer-facing products, they're constantly running focus groups. And I actually wrote a piece on this called challenging healthcare to engage in a Pepsi Challenge. The idea for this story came from a book I was reading called Blink by Malcolm Gladwell. And in it, there's this whole section on Pepsi and Coca Cola. And he talks about how they were really had to have, I mean they still go head to head, but how they were trying to figure out what they could do to get consumers to buy more of their product. And so coke even went to such lengths that they ended up altering their secret formula based on feedback from consumers. They have this really secret formula that they are used for years and they altered it to try to sell our product.

Lilly: 15:40 And as I was reading it, and this was right around when I started at Savvy, just thought, oh my God, if we could get health care to engage patients. For the way that consumer-facing industries engage patient, engage their customers. We would be golden. I mean health care would actually be innovating in making things that matter to patients because right now part of the problem is so much money is being wasted on products that patients don't want or that aren't the right fit or that don't even end up being successful. And so not only is it really d quote unquote right thing to do when you engage patients, it's actually a really smart business decision that helps save money and earn more money because your end user is happy. They want the product.

Janet: 16:38 You know, I've been involved in the startup community for a while and a lot of Startup Weekends are about young people coming in with an idea and I'll give them credit. They're thinking through challenges that people unlike themselves or having predominantly their grandparents, for instance, their Nana or their grandfather, and they've got this really cool idea that they may be figured out at Thanksgiving, I could solve this problem. The problem is I wonder if they've actually researched it and talked with not just their grandparent, other people in the industry. So how exciting it is that they seem to be getting startup funds and get support for an idea that really hasn't drawn in the patient's perspective and that generationally it hasn't really been vetted out by a true need.

Lilly: 17:25 Yeah. And you bring up such a great point because the young tech entrepreneurs are, while they mean well and I think that some of them are doing it right. Okay. They are doing their research to actually really yeah, boots on the ground and talk to the patients who this matters too. And I had the opportunity now to work with a number of different companies who have made the decision to talk to patients and are actively working with them and it makes a major difference in the development of the products in a way that it's iterated on. I mean, I have to give the hats off and a shout out to Clara Health for bringing me on as their patient advocate as one of the first hires. That's really unheard of at most small health tech companies and but, but that made a big difference because I was able to come in and share my perspective and then say, Hey, you know what?

Lilly: 18:20 I'm going to give you this perspective, but we need to bring in a lot more other patient perspectives. If we want to actually develop a product that's going to meet a diverse set of needs because one patient, much like in a consumer-facing industry, you can't talk to one person and build an entire product off of that. That's crazy. People would not do that. It would not be allowed. And in the consumer-facing industry, you would not get to move forward with that product. It just wouldn't be an option. How tap? Because it has not been and in healthcare in general, because it has not been the status quo to talk to the patients. Nobody's doing it and you're not expected to. And VC firms aren't forcing these companies to talk to patients because again, it's just not what's expected. And I think that it's resulting in a lot of products that are not making it to market or are startups that are failing.

Janet: 19:12 And you know, there's a limited supply of cash out there and every time we see something fail, that limits the pool of cash for other maybe more on focus ideas that have maybe a little bit deeper research or a better validation. I love that everybody's trying to solve problems and I'm sure that that was a good thing they were trying to do, but really how many diabetes apps do we really need? I think it would be very cool, you know if we could figure out how to get the patients involved in doing this kind of development.

Lilly: 19:43 Yeah, I mean certainly. And so really our plea at Savvy is that you get out there and, and you talk to patients and we've also made a real effort to be startup friendly. I think another big part of the problem here is that it can often feel cost restrictive to some of these small startups to be able to say, hey, we need to allocate the money to go talk to patients. And so what we've done is we've created a pricing model that does accommodate some of these smaller startups that they still have the ability to talk to patients but not break the bank because we understand that every dollar really counts when you're at that stage. And so I really encourage companies, help small tech companies to spend the money. It will be worth it. I know every dollar counts, but it's so critical that you spend that money there.

Speaker 1: 20:32 You know, one of the things you mentioned is that diversity in your community is really important, but when I think about the number of conditions and disease states out there, holy cow, your community could end up being millions and millions of patients.

Lilly: 20:48 Absolutely, and what's interesting about our co-op model is that we already have a very large reach. So because our patients are owners, many of them are owners and our platform rights, they own a share and again, they share in our profits at the end of the year. This means that let you know if we're recruiting for a company that really wants to talk to a thousand patients, a thousand patients in Crohn's disease, let's take Crohn's disease because that's what I have and it's an easy one to go to. And let's say we have 500 Crohn's disease patients on our platform. We could reach out to those 500 patients and they'd all find us enough to get us to that 1000 and sent the company and they would all do that because they're all highly motivated in Savvy success because when we are successful, they're successful. And so it's a really, really unique model unlike anything else that exists. And so we're able, we have this really special reach into private Facebook communities and support groups and boots on the ground because our members are, are the conduit. There are salespeople of Savvy, of spreading the good word about patient feedback and bringing their fellow patients into the fold.

Janet: 22:05 Okay. So what I'm imagining is that there are a lot of groups that patients may be involved with, ones that are, say specifically about their disease state or condition where they're talking to patients. So that's not really what you're trying to do out there, but they can on your behalf, recruit more people with like conditions into your projects.

Lilly: 22:28 Exactly. And that's how we get a more diverse range of folks on our platform as well. Because not every patient works with an advocacy group or shares their story on Twitter or regularly it goes out to companies. So that's sort of the low hanging fruit if you will, or the patients who are easily accessible. But there are a lot of patients who, you know, maybe live in the middle of the country and the way that they're expressing their patient journey or they're learning more about being a patient is through a local support group. And so we're able to reach those patients because we have folks on our platform who are connected everywhere, which is really, really special. And just unlike anything I've ever seen working in this industry.

Janet: 23:18 You know, and that's a really big issue for hospital systems. I know for instance, in the state of North Carolina, we've had some rural hospitals close, well those patients still live in the rural parts of North Carolina where those hospitals formerly were, and they're losing all kinds of resources, not the least of which is the ability to connect to other like-minded patients. So as we look at critical clinical trials, mostly taking place in major cities or even midsize cities, there are a lot of patients that are falling through the cracks, are not getting to participate because of this limited geographic viewpoint.

Lilly: 23:55 Right. On the money. I don't even have anything to add to that because that's exactly what we're always talking about.

Janet: 24:02 Excellent. And I'm glad we're on the same page. So tell me about the kinds of things that as patients they can get involved with. And I'm assuming that of course, this is all going to be Phi protected health information, or are they participating in anonymously? Are there times when they would actually block their identities from being known?

Lilly: 24:22 Yeah. So it all depends on the gig. So when we call them gigs, because what we like to say is we've created a gig economy for patients. So patients can log onto our platform and they can see different opportunities that are open to them and they can raise their hand if they feel there are fit. So some of them involve maybe an anonymous survey where you provide your feedback online via a survey. Some could be sharing your story via a blog post with a company, um, in which case you would be talking more publicly about your story. There are gates that allow you to stay in anonymous, but there are also games that allow you to get out there and share your story. And, and I think we certainly have a mix of patients on our platforms, some who really want to be out there and some who still want to contribute but want to do so in an anonymous way. So there are options really for everyone.

Janet: 25:09 Oh, well that's excellent. And I think you're gonna find that you probably have already found that there are patients who are just tired of being in the dark and they're learning to embrace, you know, where they're coming from. And of course, we get to the question of stigma and while they might be ready in their own groups to come out and talk to other health professionals that don't necessarily always translate to their own neighborhoods or even inside their own home, you know, talking about their conditions with friends and family.

Lilly: 25:38 Certainly. Yeah. And, and that's something that we're very sensitive to because we know that unfortunately there is still a stigma for patients within their kind of everyday communities and in the workplace. And some people would like to keep that private. But it is my hope that we can continue pushing to raise awareness, especially about some of these invisible illnesses where people, you know, in your workplace, they may not fully understand and you might not feel comfortable sharing with them that you living with an invisible illness. But I want it to become more commonplace, that that's what people are doing so that we can raise more awareness and people can understand that, you know, if you're living with an autoimmune disease, when you'd say you're tired, you can't come into work because you're tired. That's not a normal tire that's on a tired, that healthy person feels, that is crippling fatigue that forces you to be in bed all day. You just, you barely even feel like you can take a shower because you're so tired. And so I think that we need to actually keep pushing. And I do encourage people when they comfortable to share their stories, wherever they can with their workplace, with their family, with their friends, and with their communities to help raise that level of awareness that we can have better support services in place where people living with invisible illnesses or autoimmune diseases.

Janet: 27:03 Oh, that's excellent. Probably have already found that there are patients who are just tired of being in the dark and they're learning to embrace, you know, where they're coming from. And of course they, we get to the question of stigma. And while they might be ready in their own groups to come out and talk to other health professionals that doesn't necessarily always translate to their own neighborhoods or even inside their own home. You know, talking about their conditions with friends and family.

Lilly: 27:30 Certainly in it is, and you know, we'll get there. It's taken time. But if you look at cancer, cancer, something, something like the American Cancer Society, that advocacy group has been around for, I think it's over a hundred years and anybody says, you know, so and so, and my family was diagnosed with cancer. There's really this automatic empathy that strikes I think between a peep. People get it, they understand how difficult that is and if you were to communicate that at the workplace, it would be understood, oh, this so and so needs to take time off because they have to care for their family member who has cancer. We lack that same sense of empathy when we're talking about invisible illnesses, autoimmune diseases, mental health issues are another big one. And I believe the only way that we can really push forward in that is by people coming out and sharing their experiences and telling their story.

Lilly: 28:29 Whether it be at companies or just at your, in your local community center is at Church, at a place of worship at the local YMCAs. It needs to be happening everywhere. It really is a grassroots movement. It's amazing what all of these patient influencers have done and the movements and changes they are helping make in shifts in mindset. But a lot of work can be done on a grassroots level as well. And so it's my hope that you know, we can continue to inspire patients to, to get out and feel comfortable to share their experiences and their stories.

Janet: 29:02 Now you just got back from a conference that was very patient-focused, didn't you?

Lilly: 29:07 Yes, I was at a Patients as Partners in Philadelphia and it was my first time there. I spoke with a number of folks who said, oh my gosh, you're going to love this conference. It's one of my favorites. And what's really special about it is that on almost every panel they have patient representatives who speak on behalf of patients and advocates alongside industry professionals. And that's really unique because typically at a conference you'll see a handful of panels, maybe sometimes no panels that include the patient voice. And so this is really unique in that the patient really is present throughout the entire conference. I think it makes a massive difference in the strength of the content, the value of the contents. And I only wish that we could scale it up to see this happening at more conferences, not just patient-focused ones, but really across the board and in every nook and cranny of industry.

Janet: 30:09 I really challenge every single health conference, not just to make a place for patients to actively engage, but to fund their presence through scholarships because let's face it, so many patients are facing huge financial burdens. Therefore, it isn't just a question of time and even money and the hotel, it's like money for food or for care for their families at home while they're away at a conference. I'd love to see more of this happening.

Lilly: 30:39 Yeah, Janet, you couldn't be more right. And, and that is something that patients face. It's like, okay, now we have a seat at the table, but what about the fact that we have to take off work to go to this conference? You know, maybe not all of us work in the industry and, and so for us to have to leave work and take time off, and find childcare, daycare and who's going to go check on elderly parents? There's just so many factors that we need to think about. And then this kind of goes back to the clinical trials as well. This idea that we need to be designing experiences around the patient's life. We can't expect patients to just plug into what we want them to plug into. That's not fair. That's not right. So I do, I challenge people to really think about how we can design around the patient instead of, you know, trying to get them to just plug into what we've already developed.

Janet: 31:37 You know, you mentioned to me earlier about the administrative burden that gets put onto a patient file or in a specialty Pharma situation. Can you describe that a little bit more?

Lilly: 31:47 I'll talk about it a little bit from a, from a personal point of view and something that I've been experiencing over the past couple of months and really have been quite infuriated with the burden that I has been placed on me when it comes to dealing with insurance and some of the specialty medications that I need to be on. And I'll preface this by saying I'm in medically controlled permission. So I function remarkably day to day, kind of like an average person, which is again, remarkable and, and all the credit in the world to this industry that has developed these, these life-changing medications. But there are a lot of patients who are dealing with administrative burdens on top of being incredibly sick and being so sick that, you know, as I was talking about that they can barely take shower without feeling exhausted. So keep that in mind.

Lilly: 32:42 Is that, as I kind of talked through all this frustration, there are a lot of people who are dealing it with, with it while they're actively sick. And I just can't imagine that. So lack of specialty medication is something I need every two months and it costs $20,000 every two months. So it's a hefty price tag. I am very fortunate that I'd have an insurance that covers it. But for years now I have had major issues with ordering and delivering this specialty drug. I spend all of this time coordinating hours with my physician who needs to write the prior authorization, which goes to the specialty pharmacy and my insurance. And then it gets, you know, most recently I was told, oh it's, it's approved, it's approved. Okay, excellent. It's approved. Great. I get a letter in the mail saying it's approved. I called to schedule the delivery. Oh No, it's not approved. I'm not sure why. I said, well, I have a handwritten letter from, from you that says this, this medication has been approved. So, oh no, I don't know what's happened with our system. That's, that's not the case. So then it's up, got to go back to my physician who my physician then has to call the specialty pharmacy and then I call the specialty pharmacy again to check in and you get the picture. I mean this is this, it's a constant frustration and this is one time and so finally we get it all set up. The delivery is supposed to happen. We get to the day, I stay in my apartment all day. I do not leave my apartment, I do not take a shower. I did not do anything because I don't want to miss the ups truck that delivers my medication.

Lilly: 34:21 And so it's 3:00 PM and I receive a notification on my phone that the medication has been delivered. And I say, well that's interesting because I'm supposed to sign for the medication and I had no bell ring. And then I pop outside. I'm like, Oh, they left this $20,000 medication outside. Somebody is in trouble, but the medication isn't even there. So now I'm left, you know, in a frenzy trying to call ups to try to figure out what's going on. I am. Nobody's being helpful. I kept, I keep getting kicked out to an international helpline. And so I go to Twitter and I started tweeting about it and I, the patient community totally rallied around me and it ends up that I get the phone number, the direct line to the San Francisco office. Then you need to speak to again on the phone with them.

Lilly: 35:08 They tell me that it was delivered to the restaurant next door. Oh my gosh. So my $20,000 medication is sitting in a restaurant next door that I was supposed to sign for. So I first opened my door, run downstairs to the restaurant and they have it miraculously and they put it in refrigeration because it says perishable on it, but at, so I get the medication. But it was only because the only reason I got my medication that day was because I am on Twitter actively and how to following within the patient community. If I was kind of, you know, an everyday person who didn't really, you know, have the wherewithal to like navigate all this and put it on Twitter. And I mean, I don't think I would have had my medication. And that is upsetting to me because Twitter shouldn't be a privilege to get your medication.

Lilly: 36:03 And so that's just one example. I've got a million more examples of, of instances like this that happened. And I know that this is, this is the struggle of countless patients who are on some of these specialty medications that they deal with. And so there is a massive administrative burden being placed on the patient to be coordinating appointments, to be coordinating medication, to be calling insurance and fighting insurance bills. And I, I mean, I feel like I spent half my life on the phone fighting with insurance about charges. So this is just the reality that patients are living with. And I, and, and I don't think this administrative burden is fair and I think there's a lot of work that needs to be done in that space and I'm eager to see more people come into disrupted. I'm, I'm encouraged by some of the insurance companies that I've seen coming into the space like Oscar health. They're a startup insurance company and I'm actually a member of theirs right now and I've been really impressed by air communicative nature and how easy they make everything and the on-boarding and so I'm really thrilled to see some innovation happening in this space and I hope we can continue to move the needle because it's a big issue.

Janet: 37:18 You've raised so many good ideas here for startups and to inform them about issues being faced by patients, but I do want to clarify one thing. The Savvy Cooperative is not a place for patients to come and share stories with each other. Right? It's not a support forum. It's about getting the patients from a business perspective, engaged with the health care companies, the Pharma companies, people who need to better understand what the patients are going through. They need to reach those folks, which sometimes is very difficult to do. Is that right?

Lilly: 37:50 Yeah, that's a great point. And I'm glad you brought that up. And, and the reason that Savvy isn't necessarily a place where patients can talk and share their stories is that there are already so many people out there who are doing that. A lot of advocacy organizations have offered that platform and we see a number of different people who have taken the initiative on that. But we really haven't seen people coming in and, and giving patients an opportunity to monetize and to really actively get connected to companies and, and transform the space. And so I, that being said, I think that Savvy really is a wonderful community of patients and a community has sort grown organically if you will be, all the patients who have been involved. And we do share the stories of some of our members, but it's not really a place for that pure peer support. It's more of a place for, hey, how can, how can I share my experiences too and get paid for doing so.

Janet: 38:54 Okay. Awesome. Now you do, I know, embrace social media and I know that you have a Savvy chat on Sundays. What's that all about?

Lilly: 39:02 Yeah, so Savvy chat is where we actually chat with folks for really like across the industry, which we chat with patient advocates as well, but we chat with people who are doing really cool things in the patient experience and patient innovation and patient feedback space. So we try to bring that to light so that we can spread the good word and share ideas so that we can start to see this movement happening across the industry.

Janet: 39:33 Oh, that's exciting. All right folks, now you know where to go to get involved and let's direct people how to find them.

Lilly: 39:39 Yes, so if you go to Savvy.co op, that is really all you need. You can go right there and our social media is there. We're on Twitter, Instagram and Facebook, and YouTube. But you can sign up very easily. You can create a profile. You also don't even have to sign up to see the gigs. You can go in just as we, because we want it to be accessible to everyone. So if you don't want to sign up, you don't have to, you can just sign up for the gigs that you're interested in. But of course we do hope you sign up and we do hope you become a cone or it costs $34 it's a one time fee to become a co-owner. And we do have financial aid available for those who are unable to afford the $34. So again, it's a very accessible platform and we're looking to bring diverse perspectives. And so patients, caregivers, healthy participants, all are welcome.

Janet: 40:34 Oh well that's awesome. I hadn't thought about healthy people.

Lilly: 40:37 Yes, well they're important to write for sewer and it's, and it's interesting because you know, at some point, unfortunately in our lives, most of us or all of us will become patients. And so getting actively involved in research, we certainly have a number of people on our platform who maybe are healthy participants because they've seen loved ones who have been through something and they all still want to be able to give back.

Janet: 41:00 Okay, great. Well, I'm thrilled to have finally had the chance to talk with you, Lilly. And I am sure to put all of your LinkedIn and social links in the show notes for this podcast so people can find out more about the Savvy Cooperative and folks. Of course, it's Get Social Health.com if you happen to be listening on a podcast APP, you can come on over to the website and get all of this information.

Lilly: 41:22 Well, thank you so much for having me, Janet. I love the work that you guys are doing. You've brought together, you really created such a vibrant community of health care professionals and I am honored to be a part of it and look forward to continued collaboration.

Janet: 41:39 Thank you, Lilly.

Announcer: 41:41 You've been listening to the Get Social Health podcast. This show notes are located at getsocialhealth.com to join our healthcare social media journey. Follow at, Get Social Health on Twitter and start a conversation.

A healthcare website is a critical element in patient communications even before they become a patient. Setting up and maintaining an active website is not easy and requires specialized skills. On the Get Social Health podcast, Janet Kennedy interviews Ajay Prasad of GMR Webteam and the work they do create and optimizing healthcare websites.

Listen to the podcast or drop in on the timestamps below: 

Janet:                                00:00                   Five years ago or so, you used to be able to build a website and expect that patients would come. Well nowadays "if you build it. They will come" only works for baseball fields, built in obscure corn fields in the Midwest. Now you need a real digital online expert as part of your ongoing web presence and I've got one for you today. Joining me on the podcast is Ajay Prasad with GMR Webteam and we're going to talk about those other things you need to do besides have a great website on Get Social Health.

Announcer:                      00:40                   Welcome to Get Social Health, a conversation about social media and how it's being used to help hospitals, social practices, healthcare practitioners and patients connect and engage via social media. Get Social Health, brings you conversations with professionals actively working in the field and provides real life examples of healthcare, social media in action. Here is your host, Janet Kennedy.

Janet:                                01:07                   What are the important things about being accessible to patients is to be, I found online and that isn't as easy as some might think. It's not as simple as putting up a website and the patients will come. With me today is Ajay Prasad. He's got his own company, GMR Webteam, and they're doing some really interesting things with online presence for a wide variety of health care practices. So I wanted to drill down a little bit and invite him on to Get Social Health so I could ask a lot of the dumb questions that honestly I still need to ask and I'm sure as healthcare practitioners you might need to ask. Ajay, welcome to the podcast.

Ajay:                                  01:48                   Thanks, Janet for having me. And I'm excited.

Janet:                                01:52                   This is a very interesting subject to me because I am involved in a part of this equation, but not the whole equation. And what I mean by that is my partner, Carol Bush and I have a company called the Healthcare Marketing Network and we source freelance healthcare writers, many of whom are clinicians for companies like yours. But in many cases, good content is just one part of a good online presence. So I wanted to talk to you today since your company focuses on healthcare and learn a little bit more about what is unique about that and what is unique about having a presence as a healthcare practice. But before we jump in, I think people need to know a little bit about you. So tell me a little bit about your company. I know you didn't start exclusively in health care, so tell us a little bit of the journey of GMR.

Ajay:                                  02:42                   Sure. Before I even started my company, I had a very extensive experience in marketing in general and the last couple of years in the Internet marketing, which was a very new thing. I started GMR Webteam in 2004 so we'll be celebrating our 15th anniversary in a couple of months. When I started, Actually you'll be surprised, very few people even had website. So we started then and, and my goal always was to help businesses really get the most out of Internet, which was like a mystery in those days for them. Now everything has gone to internet, so it's no longer a new thing. That's where I started. My personal background has been in, you know, doing marketing in several industries. So I did not start with, with any kind of specific focus on healthcare. I was doing marketing for all kinds of businesses and I had several businesses, but over a period of time, we started to realize that in the healthcare area and whether it is medical practices or urgent care center or dental practices, smaller surgery centers, generally speaking, they will understand the least of it, you know, digital marketing.

Ajay:                                  04:01                   And they were the ones who really needed it, but they did not realize that they needed it. They don't have the expertise. As you know, you won't run into many medical practices who have like a marketing manager. So we started to, I started to realize that we're becoming like a marketing department. Think offered as far all our healthcare client. So the gradually we just moved away and we stopped taking any other client. We just totally focused on healthcare because we started to also see that the healthcare marketing was fairly different from, you know, not conceptually, but on a day to day basis. You know what is important was so different that by focusing on just the health care practices industry, we could become more efficient. So that's when, so gradually we moved away or always even among my first clients were healthcare providers, but now we just totally focused on healthcare.

Janet:                                05:00                   I have a couple of questions based on what you just said, so we're already starting off with, you know, it is a mystery and yes, I think in 2004 there were a number of practices, if not the majority of them, didn't even have a website. I've also heard that there are still healthcare practices without a website. Many, many healthcare practices without a website, which really baffles me. But I think the part of the reason is, the older practices, all the partners don't understand because they are not active online so they don't get it. But as they start to get younger partners that's the first thing that it seems like the younger partners want is a website. Because guess what, the younger population, they are on the net a lot, so then they know the value.

Janet:                                05:54                   Absolutely. The other interesting thing is while those providers themselves may not be utilizing online, what are the fastest growing groups in Facebook and online is the 65 plus, because guess what? They hit Medicare and now they really need to understand what's going on.

Ajay:                                  06:11                   Exactly. Right. You are so right. It used to be that Internet presence are, the market was only for the younger people, but now the biggest growth is in the older segment and really I an internet, they're realizing it's not a big mystery one Google, you type a question and you'll get the answer.

Janet:                                06:31                   Okay. But I think that mystery is how Google makes that look so simple, but there is so much happening underneath. You know the old adage about a duck on a pond and they look like they're just swimming along nice and smooth but underneath their feet are going a mile a minute. And that's how I feel the Internet is to me. There's a whole lot going on under there. I don't understand.

Ajay:                                  06:54                   That's exactly right. When you go on Google and let's make it relevant for the audience and and say you are in, I live in Irvine, California. So if I go on Google and just, and if I'm looking for a say a primary care physician for example or ophthalmologists and if I type up their model is in Irvine, yes, you'll find a lot of you know, you will see the list of ophthalmologists, right? But how they appear in what sequence, you know, first thing I can tell you that not all ophthalmologists will will show up and the ones who show up, you know, why someone is showing up on top ranked number one versus of why someone is showing up on page two, page three? There is a, there is a very, I would say well defined logic behind all that. So just like you said, you don't see how fast, you know what is happening on the under the water.

Ajay:                                  07:48                   See I behind the scenes there a lot of activities that is being done and that's why you see someone show up number one. And, and just to let you know on Google and the value of it, if you are number one... suppose there are a hundred searches for ophthalmologists in Irvine. I'm just throwing a number and if you will show up on number one 35 people, we'll we'll go to our website. Click. Generally this is, I'm giving you a very broad, Google start. If you are number two then you will have 15 people. If you are number three then you'll have 10 people who are searching for will, will show up and beyond that now you're looking at a handful, four or five people. That's it. So it's makes a big difference where you are ranked in terms of what kind of results that you will get. And how you're ranked is, you know why you should be on number one versus number 10 or number 30 on Google listing. That is a mystery that needs to be solved and that's what we solve.

Janet:                                08:49                   Right? Well, you've heard the expression "Where's the best place to bury a body?" On page two of Google!

Ajay:                                  08:55                   Exactly.

Janet:                                08:58                   Okay, so can you buy your new way to number one? Can I just buy an ad and be number one?

Ajay:                                  09:04                   So you know, the answer is yes, that you can buy an ad on number one. But here's a challenge. So if you don't have a very good web presence, then you will have to pay a fortune. And it's still, you may not be number one because we will now, even if you're paying Google money, they have a very strict requirement that you have to meet in order to, to show up number one on, on the advertising, but then your bigger challenge, all of it also is that about 65% of the viewers of the people who are surfing would skip ads because they don't trust advertising. Right? So they will skip all the ads and they will go straight into the what they call organic ranking. So you can do it unless you are, and by the way, or in some instances you could, you may say, I will pay $500 for each click and still you may not get to number one. So, so that is again, there's a, it used to be very simple. By the way, when I started this business, we would pay the highest would show up. Number one is no longer true. Now even when, if you are advertising,

Janet:                                10:14                   All right, well we know that how Google ranks is something that companies have founded complete businesses on just following Google and trying to figure out day to day what they're doing. So you now have a dozens of healthcare clients who need to know that kind of information. I don't think this is potentially manageable in any way, shape or form by a practice. Even with an in house marketing department, which as you mentioned, a scant few even have.

Ajay:                                  10:46                   Yes, you, you are very correct because in order for you to get ranked, there are unique to have expertise in five, six different areas. You need to do to be an expert in social media. You need to be an expert on, on website design. You know, in terms of speed and loading and all that you. You need to have a lot of content and that content needs to be marketed. So, there are five different level of expertise because even in social media, if you are an expert on Facebook, that doesn't mean that you can also do a Twitter, right? Or you can do LinkedIn, but you need to be doing all of the above in order for yourself to be ranked Google. So what, what happens that the best that a practice can do is if they have a marketing manager.

Ajay:                                  11:42                   Generally speaking, marketing managers will work with an agency like ours because we have experts on our payroll on all those areas. So yes, you know, we will have five people working on one project, which we have typically we have five, six people working on one project, but they are not working full time. So even if you have all the money in the world and you say, okay I'll build the team. Yeah, wasting money because on the all these small pieces you don't need full time employee. So most of my small practices we spend like you know, 50 60 hours a month. So you're going to imagine it's not like a lot of work. And that also in, we have like four or five different kinds of people doing. So one of the reasons why we are far more efficient is we have experts working on it.

Ajay:                                  12:33                   So it's not like every time we are trying to figure out what to do. And so that's what is needed for a website to be ranked higher. And it just does not make sense even for very large companies. We have medical providers that with the revenue in billions of dollars who are still using our services because they realize it doesn't make sense. I mean they say ton of money by using us and the, you know, they have a vice president of marketing who works with us.

Janet:                                13:09                   Even the vice president of marketing doesn't want to have to learn about, and you know, every day the changes that are happening in SEO and keyword research that Google makes. Hire the experts.

Ajay:                                  13:22                   Yeah, it wouldn't make sense. You know, we have people whose focus is to stay on top because part of the problem with the online marketing really is say Google, it's a moving target. What is most effective today may become like a negative tomorrow we will just changes algorithm. And all of a sudden you said, oh, what happened? So you have to be to totally stay on top of what is happening on the Google world. And by the way, Google does not announce it, right? So it's not like Google is saying, hey guys, we are making these changes. We will gives you a very broad outline and then there's a lot of trial and error that goes in now because we have 65 plus clients. So we, we tend to pick up very quickly on what happened if suddenly Google Changed Algorithm, we can just based on which of our accounts got affected, helps us sort of, you know, figured out what happened and then we can make adjustment and generally speaking it in or it is okay very quickly. But yes, in order, this is a big challenge.

New Speaker:                  14:31                   I understand the update last August was particularly devastating for healthcare. A number of practices and health care organizations have said that the Google uptake just really kind of wiped out a lot of their response rates and a lot of their ability to do well in search.

Ajay:                                  14:49                   So again, so one of the things that Google did is some of the practices that were, you know, very common in I would say up and up, some do three years back, Google decided that they are not going to, so first they said, okay, we are not going to give you credit for these activities, right? Certain activities. And then all of a sudden they said, okay, now you get like a penalized if you, if you are doing this. So if you did something three years back and what we do is the moment Google announces that, you know, you don't get credit for that, we start removing those items okay.

Ajay:                                  15:29                   From our, our activities just to see number one, do they mean what they are saying? and if they are we cleaning it so that we know that it will always come in and analyze it. So, and the one of the things that we will did last year, by the way, which also impacted a lot of practices, so they started giving a lot of weight-age. So they always were giving weight-age on is your website mobile friendly? Right. Because majority of the searches now are happening is happening on mobile. But then they said, okay, now we are also going to give weight-age on how fast your website comes up on mobile. Okay. And that's an entirely different challenge. And it was one thing to create the website that will be that will adjust automatically on the smart phone versus on the desktop. But the challenge of, of now doing that website so that it loads on mobile very quickly is it was so daunting.

Ajay:                                  16:26                   I mean, just to give you an idea, we had to literally Redo the website of many of our clients and we had to basically create two different websites. One for mobile, one for desktop, you know, order to two. Again, comply with Google requirements. And by doing that we moved up very quickly because the ones who did not do it, you get paralyzed. So, so that's where that is part of the problem where you have to stay totally on top of what is the latest requirement and make sure that you comply. If you don't, then you get dropped.

Janet:                                17:02                   That sounds so overwhelming. And I would be so happy to outsource all of that.

Ajay:                                  17:08                   Yeah. I mean it, it, it's almost like, you know, if I'm, if I get sick, I'm not going to go on, on web MD and, and, and do my treatment. Right. You know, I'm just going to go to a doctor, you know, who can, who has the experience. So I don't care how much research I do on Web MD, I will never be able to come up with what exactly it is. We know with confidence. So, so yeah, I would, I may want to get informed, but it's still, I want to get treated by a doctor. So I encouraged, by the way, I really love my clients who are up on what is happening on the internet because unfortunately most of my clients, it's like a mystery to them and they don't want to learn. I mean they are like, you know, I already have too much work or taking care of my patients so I'm, I'm, you know, it's your headache. But the, some of the young doctors who stay on top, I find it really easy to work with because they understand anything I say.

Ajay:                                  18:11                   It's like, Geez, you know, I, that's what I read. You know, what are you going to do? It's a whole different discussion versus saying, so Google has changed and we have to do this. And the doctor is saying, I don't know. You know why we have it

Janet:                                18:26                   "It looks fine to me!" Well do you find that dealing with different practices based on their patients? So let's take two extremes. You've got your orthodontist where the majority of the patients are, you know, teenagers or sell and then maybe a podiatrist where the majority of patients are mature adults. Do you find that the work you do for those two different types of practice is very different? Or are you still going through the same process to make sure they're online presence is good.

Ajay:                                  19:01                   Okay. So first thing, you know, just like in traditional marketing, you have to tailor your message right to the target audience, you know? And so, so, you know, what is your target audience? What will pick their interest, why they would follow something, why they would read something. So of course the messaging has to be a very specific to the potential client or the of all the patients of our clients otherwise over-arching process is same for for Google. But then then by the way, one of the things that Google also rate you on is how many people when they go to your website and suppose someone goes to a website and just clicks back. It is a demerit and Google will rank you down because they are saying, hey, you know your looks like your website is not relevant for this keyword. Right? So, so the messaging on the website is become very important and the way you engage with the messages, you have to make sure that, that your message is tailored to the, to the target audience.

Janet:                                20:06                   All right, so I think what you're talking about there is the bounce rate. Someone comes to the website, they click on there and go, oh, that's not what I'm looking for, how quickly that happens.

Ajay:                                  20:15                   And, and if that happens a lot, then then you'll see yourself dropping and dropping and dropping. And the worst part is that the more you drop, then the more your bounce rate becomes, because now you're getting like, you know, the people who are, I don't know, they're browsing so they click and go. So, it's almost like a death spiral when you start to see or bouncer to increase. So that's where the whole messaging, you know, a call to action, all those things come to make sure that you are engaging your you know, patient or the prospective patient will come to the website.

Janet:                                20:53                   I would assume that when you get a new client, that's probably one of the first things you look at. How relevant is your website to a current audience?

Ajay:                                  21:01                   Exactly. So, so, you know, the good news is that, the, we have a lot of, unlike like when I used to be in TV advertising, that's where I started my career. Unlike dark, everything is very transparent on digital. So when we get the nose, sometimes we will get a client and they have not even the website is not done properly. So we cannot even read, you know, the information. But if everything is done right, install, on the website, you would know from analytics exactly what is happening. And so the first thing, first we do is we analyze that, the their data and then we pinpoint where the problems are, and then we will from there is, it is the part of the initial discussion, we always ask things like why someone would come to you. I mean, in what you do is very obvious, but, but why you, why not the other orthodontist or why not the other primary care physician who is in your insurance list?

Ajay:                                  22:00                   Right. So I mean, you know, it's it just dead. I just recently was meeting with the wood with a prospective client who said, "I don't know why I need marketing because all my patients come from the insurance list." So my question simply was "In your area, are you the only doctor in the insurance list?" He said, "No, no, no, there are about 15 so." I said, "Okay, so if I am a new prospective patient, I moved in that area and I buy this insurance. I'm given that there are 15 doctors, why should I come to you versus the other 14?" And he said, "Okay, I, I see where you're coming from." As you can imagine. It is so personal. It is so critical that the patients will be for the selected doctor, they do a lot of due diligence and then you have to stand out among whoever you are competing with.

Janet:                                23:03                   Now what I think is interesting about what you do at GMR is that you really partner with your clients and you hold them accountable for their practice. You can't, in essence, you're telling them, I can't buy you a number one position. All is you're going to commit to being that practice. I think that's really fascinating. Exactly. So, so, you know, we first thing,

Ajay:                                  23:27                   You know, one of just, just sort of, you know, one of the, the goals that we have in our mission is, is we want to increase the market share of patient-centric, providers. That's what we always say. So, so when we, when someone to us and says, you know what, just give me a CEO and I'm like, you know what, even if I do that, you're not going to get a new patient, even if I can get you on number one, which is very difficult unless someone is taking a holistic approach anyway. But our big thing is that we cannot do magic unless you really care about your patients. Unless your patient is happy with your services. We cannot go in any magic. So, so that to me is the requirement. So when, when someone comes to us, we said, I'm assuming that you are, you want to take care of your patient.

Ajay:                                  24:20                   And so one of the things that we do, just sweat, you know, is part of, as we, we start measuring patient satisfaction, we will not take a practice who says, I don't need to measure my patient satisfaction. Because then I'm like, you know what, I don't know where your problem is going to be. I don't, I will never know much about your practice. So you are better off going to another company who does not. Because to me that's a central piece is we look at patient satisfaction, you know, that tells us where they have to make an improvement. what is their strong point that helps us with the marketing message, right? You know, what people like about you. We help them identify the weaknesses and get around the weaknesses. How, how, what, what you handle. So that is the starting point. We just say, listen, unless you are taking care of the patient, really, you know, we can't help.

Ajay:                                  25:13                   And that's one of the reasons that it's unfortunate. But what I'm noticing that, so I am in California, there's something called medic cal here, which I don't know if it's some some state program, right? If you don't have any insurance, then the state will I guess buy you insurance. But they don't pay a lot to the providers. And as a result, many good providers don't take that as a result. The ones who take it, they're overwhelmed and they will blindly tell you that. You know what, frankly speaking, I don't care. I, you know, these people come in of what I want is I need more like a more patient with good insurance. And I'm like, unfortunately it just doesn't work like that. If you say, oh, half of the patient can go to hell, I don't care. But other half I've, I want to be very to make them very happy.

Ajay:                                  26:04                   I'm like, just the whole philosophy doesn't work. And, and actually just because someone is on whatever Medi-Cal, that doesn't mean that they expect like a sub sub optimal performance right. From the healthcare provider. So I tell them, I totally, I am not into the business of making a decision for you. So if someone says, I don't take medical, that is great if someone says medical grade. But I, we always said that. Here's the process and the, and the number one is you have to have a patient satisfaction measurement and you have to have a very high patient satisfaction index, otherwise it doesn't work.

Janet:                                26:43                   So you actually have that as part of your services?

Ajay:                                  26:46                   Is it is a not only that as part of the sort of mandatory.

Janet:                                26:51                   And how does that work? Is it like a a survey that's sent out post visit?

Ajay:                                  26:55                   Yes. We have created our own platform and personal, we do a survey, post visit. We asked them a simple question, would you recommend this medical office physician, whatever it is, is what we are. We are surveying based on your experience today, right? And on the scale of zero to 10, and then then be whatever is the answer. We, we asked them, let us know your reason for rating the doctor or the clinic seven or zero one or whatever. so so what happens is we are constantly tracking and we get about 40% of the patients generally will respond to our survey, 30 to 40% depending on the specialization. So which is a very good sample size. And then we do that analysis, not only we see what's your average and everything. We analyze the comments and we use artificial intelligence to analyze the comment so the practice knows exactly what is their strong point.

Ajay:                                  28:03                   So we will analyze comments of unhappy patients. We just lay it out right in front of the clients and say, "Guys, you need to address this thing. This is your strong suit." And then our marketing will focus on those strong suits in our messaging in terms of why you should be coming to this provider.

Janet:                                28:26                   Excellent. Now I understand that the way you work is you just don't build a website. You are looking for someone who really is committed to the long term marketing.

Ajay:                                  28:37                   Exactly right. Because for me it is a distraction to just build a website. I don't care how much money someone is paying, so we just do a website and not do anything.

Ajay:                                  28:57                   When I first started my career, I worked for a market research company. And what we are doing is all these companies will have the issue, then we'll do research and we'll come up with this beautiful deep analysis, send it to them and we would never know what happened. And I got bored literally, and in eight months I said, you know what? I want to be on the other side. I can do something with this and, and show results. That's how I feel about just doing a website. It's like, okay, I just did a website. Who cares? Yeah. Right. and, and I would like to know that what we are doing is really helping our clients. So unless I'm able to measure and see that the plant is getting along, I'm not interested.

Janet:                                29:44                   Oh, that's absolutely fascinating. Well, I love the work you're doing and, and I really love what we talked around but didn't use the term that you developed the three pillars of health care, marketing success. I think that's critical for, for anyone and the fact that you actually tell your prospective clients that they have to commit to that I think is really, really amazing. And it speaks to your partnership with your practices.

Ajay:                                  30:10                   Yeah, I mean a killer on my website we just laid out also it's like are we a good fit? So you know, someone who is wondering whether they should be working with GMR. Of course, you know, we always explain it, someone calls, but they can go and check the website on the side. We just laid out what we do. The three pillars are, patient satisfaction, you have to have a very good patient satisfaction. Do you have to have a stellar online reputation and the new, you have to have a very robust web presence. So those are the three pillars that I talk about.

Janet:                                30:52                   It sounds like it's working for your clients and their patients. That's a great thing. I think you're doing a a wonderful job at GMR.

Ajay:                                  31:00                   Thank you.

Janet:                                31:00                   Awesome. Well Ajay, I really appreciate your being here. I do find search and SEO to be a mystery and I am always trying to ask questions to understand more about how that process works. And I know you've written a couple of books including "local search marketing secrets unveiled and plant your online biz money tree. So the fact that you've been able to kind of put some of these ideas in writing is super helpful and I congratulate you on, on the great work you're doing at GMR.

Ajay:                                  31:32                   Yeah, thank you. Last week I wrote four or five pages for my blog that says, for your prospective patient to become aware about you and what do you have to do to convert them into your actual patient. I find marketing really fascinating for the same reason that it's never perfected. It's never ending work that you have to do and it always keeps you challenged.

Janet:                                32:34                   Absolutely. Well, thank you for bringing me up to date. For at least the next five days.

Ajay:                                  32:41                   Thank you, Janet. I'm always here when any update happens. You know what? I will also make sure that when something big happens I will just let you know so that you can just share with your audience.

Janet:                                32:57                   Absolutely. Well, if you just tag your tweets with at Get Social Health, I'd be sure to pass it on. Folks who are listening, I will help all of Ajay's contact information in the show notes for this podcast. Ajay, thank you very much for joining me today.

Ajay:                                  33:11                   Thank you Janet. It was good talking to you.

Announcer:                      33:15                   And now here's a social media success tip.

Janet:                                33:19                   Hi, this is Janet Kennedy with the Get Social Health podcast. Wait, you just heard me, but you know what? Today I'm going to give my own social media tip and this is specifically for those of you who are or would like to be a writer in the healthcare space. I am so proud to announce that my partner's Carol Bush and Janine Kalbach have launched their own podcast! No arm twisting was involved at all. Well, okay, maybe a little. So what I want you to do is go check out their new podcast. It's called The Savvy Scribe and it is going to be a whole combination of things. Great interviews, fun conversations. Buckle in and go on for a great ride with them. Plus they're going to give you lots of tips and little mini sessions of quick wins. So it's gotta be a fun podcast. It's going to go all over the area of everything to do with writing, freelance writing, the freelance writing life, what it's like to be a parent and right and also some good hardcore writing tips. So check it out on iTunes. The Savvy Scribe and you can always find it on our website, the Healthcare Marketing Network.com. Click over to the blog. That's where we're going to mix the podcast and the blog posts in together. So check it out. The Savvy Scribe

Announcer:                      34:40                   You've been listening to the Get Social Health podcast. The show notes are located at getsocialhealth.com. To join our healthcare social media journey, follow @GetSocialHealth on Twitter. And start a conversation.

Seth Rotberg found out as a 15-year old that his mom had a rare neurological genetic disease known as Huntington's disease. Five years later, he tested positive for the disease. Today I'm talking with Seth about secrets, strengths and recognizing the power of community on Get Social Health.

Connect with Seth at the links below:

• LinkedIn
• Twitter
• Website
• TEDx Natick

Interview Transcript

Janet:                                00:01                   Seth Rotberg found out as a 15-year old that his mom had a rare neurological genetic disease known as Huntington's disease. Five years later, he tested positive for the disease. Today I'm talking with Seth about secrets, strengths and recognizing the power of community on Get Social Health.

Announcer:                      00:21                   Welcome to Get Social Health, a conversation about social media and how it's being used to help hospitals, social practices, healthcare practitioners and patients connect and engage via social media. Get Social Health, brings you conversations with professionals actively working in the field and provides real-life examples of healthcare, social media in action. Here is your host, Janet Kennedy.

Janet:                                00:48                   Welcome to Get Social Health. My name is Janet Kennedy and I'm the host of the podcast in case you didn't know. Today I have a special guest on who is going to share a very personal story of his own health journey, and how he is using that experience and his situation to make the journey for a lot of other people. Seth Rotberg is a rare disease advocate and a motivational speaker and he's got a really amazing story to tell, so I'm happy to have him join me on the podcast today, Seth. Good morning.

Seth:                                  01:20                   Good Morning Janet. How's everything going?

Janet:                                01:23                   Well, as we spoke before, I'm getting over a little bit of a cold, so I'm going to sound a little funky to my usual listeners today. But it's a beautiful day in North Carolina where we have eight inches of snow. Also a rare situation.

Seth:                                  01:38                   Yeah. Well, I can't complain myself. Being up north in DC, you know, it's nice and warm here. I think 30 degrees?

Janet:                                01:51                   You are in Washington DC now, but you are a Massachusetts boy. We were talking about both sox and teams up in the Boston area. So tell me a little bit about where you grew up.

Seth:                                  02:09                   Well, first off, I do have to say it's exciting to grow up with a lot of gray Boston sports, especially with the Red Sox winning the world series this past year. I grew up about 30 minutes west of Boston in a town called Natick and I'll just jump right into it.

Seth:                                  02:27                   My mom had this rare neurological and genetic disease not as Huntington's disease is also known as HD. Similar to having ALS, Alzheimer's, and Parkinson's all into one disease, slowly deteriorating a person's physical and cognitive abilities and unfortunately currently there's no cure. I found out my mom had this when I was 15 years old when she was officially diagnosed. However, prior to that she was like most people misdiagnosed for about seven years, was a long time to for someone to be told that they have depression or bipolar disorder and then find out it's even worse than that, which is a disease without a cure. Growing up it was very difficult, especially as a young person, which is kind of where we'll talk about later. The work I'm doing today focusing on providing resources and support for young people impacted by rare chronic condition, more importantly in the Huntington's disease space. And then we can talk later about my professional career trying to connect patients and caregivers. Don't one another anonymously in the health space.

Janet:                                03:37                   Well this is something that is also a hereditary disease?

Seth:                                  03:43                   Yes. You mentioned hereditary and when I first learned about it, and I'm going to take everyone back to biology class where you do those Punnett squares. Do you remember that at all, Janet? Like the Punnett squares, we have the match like the upper case and lower case like the dominant and recessive.

Janet:                                03:59                   Are we going to talk about peas in a minute?

Seth:                                  04:02                   Yeah, we might. I mean my thought was with a disease they say, well if your Dad's dominant recessive. And so when I did it, it was like, , I'm in the clear I'm all set, but that's not how a lot of these rare diseases work, especially Huntington's where I'm at a 50/50 chance of inheriting it. It's a simple flip of a coin and it's tough to really look at that and say, well where's my future going to end up? Am I going to end up just like my mom or am I going to end up props testing negative and having survivor's guilt, and that's when I ultimately decided at the age of 20 to test for Huntington's disease where I found out I tested positive. I'm a gene carrier and one day know that I'm going to end up just like my mom just slowly deteriorating both physically and mentally and not much I can do at the time.

Janet:                                05:00                   So is it a given? If you have the gene, that's it.

Seth:                                  05:05                   That's it. Yeah. I mean, unfortunately, that's how it is. And what's unique about Huntington's disease is that they can test it, they know where it is, but it's such a unique gene that you would think that they'd be like, here's how we cure it, but of course like any rare disease is a lot tougher than just saying, hey, we're going to pull it out or do something like gene therapy or DNA silencing and hope for the best. But at the end of the day, Janet, it's a 100 percent. Given that within maybe 15 or so years I'm going to start developing symptoms and there it is.

Janet:                                05:47                   You were a very young man when you were brave enough to get tested. But I understand you also didn't share that information with very many people.

Seth:                                  05:57                   Yeah. That's something I wish I did and I think the challenge was knowing that my mom was still alive and didn't want to put more on her plate. I didn't want her to suffer even more than she was. My Dad being a caregiver, not wanting to worry him, put an additional load onto him. And then having an older sister, I felt like she may feel the pressure to also get tested. So I actually only told a few friends and over time felt a little bit more comfortable telling more and more friends. But telling my family was very tough and it, it was challenging because I value family a lot and I, I was trying to do what's best for them and not having them worry about me, which again, it's, it's a difficult point because it's your family and you want, you want to be open with them, but at the same time you're like, , well how much do I share with them and how comfortable am I going to feel afterwards?

Janet:                                07:02                   And that's kind of where I was at at the age of 20. And it actually took about three years. I really thought it took about two years when I had to like trace it back. And I'm like, wow. Actually took about three years until I told my Dad and my sister and then told my family. And I did this TED-X talk earlier this year in January. And it was like what I mentioned, there's coming out of this like genetic diseases closet where I was open about it and I just felt like I didn't have to hide that big secret. Have you ever been ever had that like big secret or like a secret that you're like, you just can't share with anyone or are you just not sure how people are going to react?

Janet:                                07:38                   Well and it's also the fear that that gets built out of proportion about how people are gonna react. You spend so much time thinking about how they're going to react that sometimes it's nowhere near as bad as you imagined.

Seth:                                  07:51                   No, absolutely. And that was it. I, I figured if I was to tell them, my Dad first off might try to talk me out of it and saying, "Oh why do you want to get tested so early?" And I knew this is something I wanted to do because similar to my Mom, I would maybe drop my phone or forget a conversation or something that my friend just told me and I would think, "is this Huntington's or is this just me being a 19, 20-year-old college student who just happens to do this?" And so it was just mentally draining that I didn't want to live with the unknown. I like to plan ahead. I'm definitely one of those planners. So I wanted to know what my future held. And again, like you said, Janet, it's something that, I didn't know how people react, but I also emphasize the importance of making this decision on your own because it is a very personal decision.

Janet:                                08:49                   I can't imagine what it must have been like, not to tell. I'm sort of known as not being able to keep a secret in my family that I feel like people ought to know things. So I cannot imagine keeping a secret for two to three years about something like this. But what I'm really curious about is. So you actually have identified that you have a life-terminating disease, an illness that has no cure. Are you talking to medical professionals? Are you talking to other people who have the condition? Who do you confide in because that sounds like a really big burden for your dorm mate too.

Seth:                                  09:25                   It definitely is and for me again, I was very fortunate to have some good friends who were very supportive and if-if I go back in time I definitely would have told my family from the beginning because the importance of having that support system and making sure it had the right resources because I didn't go through genetic counseling, which again, I always emphasize when I do other talks about the importance of it because they make the process more manageable a lot easier. Nothing is going to be easy, but if you can make it somewhat easier, more comfortable, it does go a long way in the long run.

Janet:                                10:04                   Can you explain what exactly is genetic counseling? Because hey, you got what you got. So what does that really mean?

Seth:                                  10:11                   So also I'm going to open. I hope I do a good job explaining what genetic counseling is, but it's somewhat new compared at least to a lot of the main specialists, but it's done by a genetic counselor, someone who focuses on helping someone who has to figure out whether or not they should go through testing what their options were. Talking about family planning, talking about maybe life insurance or health care. So a lot of things, that we really, especially the young person, don't really say. I don't know. I never thought about, oh, should I get life insurance or long term disability care or family planning options. I originally just thought, well I can either have a kid or adopt. And then I learned later learned about IVF with PGD, which is a pre-implantation genetic diagnosis, which tests the eggs and makes sure that they're free of any genetic conditions.

Seth:                                  11:16                   And then I also found out about the whole idea of like sperm donation. So, what's funny Janet, is I was doing this talk to genetic counselors and I mentioned the whole option of sperm donation that I found out from speaking with a genetic counselor and it got me thinking right away. I was like, well which of my friends are going to be willing to donate their sperm or do I go after one of our famous Boston sports, Tom Brady or Gronk or David Ortiz or someone like that and just say, hey guys, I know you don't know me but I need a favor.

Janet:                                11:58                   Well, that's unusual and I'm not sure if there is a professional athlete for sperm donation organization, but maybe you should be the one that starts it.

Seth:                                  12:09                   Yeah. I'm not sure how they would feel about it, to be honest, but I was just more of like the idea of knowing if there's any alternatives, what are the options? And honestly just counseling you to make sure that you have the right resources and support. So when I say support, I'm not just saying family, but also friends, maybe it's professional support such as a therapist, like high trust. And then with the resources, making sure you have the right educational content to social and emotional resources. Maybe it's some type of program or service you're involved with. Maybe it's connecting to a local nonprofit. These are a lot of things that I wish medical professionals did more of, which is simply saying, like here's your results, but here are some great organizations that you should reach out to for more help or here's, you know, I'm going to follow up with you in six months just to check in.

Seth:                                  13:00                   These are like little things that I think go a long way because you know, when I, when I learned about it, I was a little lost. I didn't know what those next steps were at first. But as soon as I met some other people in the Huntington's disease space, I was like, I want to get more involved. I want to do more. And I used my results as motivation to fight back, to not give up hope. And that's kind of led me to my journey of where I've been doing all these talks. Especially this past year I've. I've lost track of how many different talks I've done, but I would say at least a dozen talks this past year.

Janet:                                13:35                   How did you connect with people in the HD space?

Seth:                                  13:39                   The first time I connected with someone it was because I ran my own throne through basketball charity event called hoops for Huntington's with one of my good friends and we would look into figuring out where the money's going to go and I got connected to a staff member for the Huntington's Disease Society of America and a national nonprofit focusing on HD and then from there I just started connecting with other people, but one of my friends, she told me about this national convention and how there's other young people and they had space and that kind of opened my eyes and say, oh wow. I'm not alone in this fight. I'm not the only young person who has to deal with the everyday challenges, but more importantly, I was always connected to older adults who had different needs than a younger person where an older adult adult may already have his career, his or her career, their family, a house where I have to figure out all of those things, plus how to cope with it in addition to like romantic relationships, personal family and friends, relationships, things like that where it was a lot easier to relate to someone around my age who understood what I was going through.

Janet:                                14:55                   And now, you're a part of a more formal organization at the Huntington's disease organization.

Seth:                                  15:02                   Yeah. So I now sit on the board for the Huntington's disease youth organization. What the young people call "HD Yo". Our mission is to support young people impacted by Huntington's disease worldwide. So we put on camps all over the world. We've done at camp in Europe. We'd done a camp in North America. We'd done a camp in Australia - New Zealand. But when, when I say youth, I mean more young people, so young adults. It could be up to the age of 35 years old and ultimately we, the organization was started because we saw that there was this missing piece where they're young people weren't getting the attention or the support they needed and we wanted to bridge that gap. We wanted to fill that missing piece, so not only do we provide camp, but we actually provide educational content on our website in 14 different languages. I was like, wow, that's, that's amazing where we can not just do it in English and Spanish and Italian, but now you know, potentially I think Chinese, a Dutch and German.

Seth:                                  16:09                   I think in Russian it's just like all these different languages and then on top of that we also have a director of youth services actually in the DC area, but she's our Director of Youth Services in the US where she helps young people make sure they get the right support and resources and connect them to the right doctors and specialists and I think that's just amazing work that I never had growing up. I didn't have HD YO. I didn't have any of these educational content that I wish I had and said, I just googled, you know, what is Huntington's disease? And I think that's what everyone does when they learn about a new condition is they google it and then they see all these big words and they get intimidated and then they either try to learn more or they say, "wow, this is too much."

Seth:                                  16:52                   I can't do this. And that's kind of where I was at his as. Especially as a 15 year old,15-year-old, , this is too much. I don't want to deal with this. I want to just enjoy my childhood. Which I essentially lost out on the whole idea of being normal, which is a whole. Just is not even a thing these days is the whole idea of being normal and it was definitely challenging. And, and so what my goal is, especially being a board member for HD YO, is honestly being that, having the opportunity to share my story, to inspire others, but also to connect people, young people to the right resources. So connecting them to the services we provide are making sure I can make sure I can connect them with another young person in their area or just making sure they know that they're not alone in their fight against HD.

Janet:                                17:46                   I am wondering a little bit about the actual manifestation of the disease. So you obviously knew very clearly that you had the potential for having it because of your mother, but is that how most of these other young people are finding out that they are also carrying the gene for HD through family members or his symptoms? Wouldn't symptoms appear in as young as the teens or twenties?

Seth:                                  18:15                   It really depends, Janet. I think their's is even a more rare form of Huntington's disease, which is the juvenile version. So how it works is everyone has actually everyone has like a Huntington gene, but there's the, what we call it, the CAG repeats your, your CAG repeats and when there's a mutation, that's when the Huntington gene can expand and then that's when you actually have the disease itself. So usually the normal gene per se is anything under, I want to say 26. It always, I feel like it varies every time I talk to someone knew about it, but usually about, I think I would say under 26, 27 is normal. And then there's this gray area. The gray area is a little confusing because it's like, I think it's, I want to say like 28 to 35, but like a section of that means that you have a 25 percent chance of showing symptoms later in life were another part is like, oh, you might still have a chance of showing symptoms, but more importantly this gray area is saying, you tested negative.

Seth:                                  19:26                   There's a small chance that you might show symptoms like in your sixties or seventies, but like very little. But the thing is if you're in this gray area, your kids can still be at risk and I think that's a thing that's not addressed enough. Going through testing, it's either , you're positive or negative. So anything over, I would say 36 and above. I believe it's 36 or above means that you have you carry the gene. The higher it is, the more progressive it is. So this juvenile version is 60 or above, so I unfortunately I've had friends who are in the juvenile stage and they're repeats are in the sixties, seventies and the eighties. And it's tough. It's sad to see, you know. I lost a friend of mine, her name was Megan, at the age of 26 to the juvenile version of this. But what Megan really taught me, not to, not necessarily to grieve, but more to say, here's how you gotta live your life.

Seth:                                  20:23                   You got to live in the moment and live with a positive outlook because that's what makes any situation a better one. And that really stuck with me after she passed away to make me honestly. She was one of the reasons why I wanted to share my story. It was because she was, even though she was struggling and dealing with the symptoms of HD, she's still shared her story. She still always had a smile on her face and that's what got me going. But essentially when people learn about it, learn about it because their parent has it most of the time. But the other challenging thing is how do you talk to it? How do you talk to a child about it? With my parents, for example, they just said, hey, your mom has Huntington's disease. It's a rare disease from what I recall again, but that was it.

Janet:                                21:13                   And so that's something else that I think HBO is trying to work on. We have some staff as well as volunteers who have done a tremendous job on explaining, are working with people of how to talk to kids about HD. We actually have a fellow board member of mine, her name is Dr Bonnie had again, and I hope I pronounced your last name right, but she is. She wrote a book about how to talk to kids about HD, which I think is amazing. I think it can relate to other conditions of how do you talk to your kids about any rare disease, any genetic condition.

Janet:                                21:45                   And that's so important. I think knowing how to communicate to children and children at various ages. You know how you would talk to a elementary age child is different from a middle or high school age child. You know, how much can they absorb, how much should they absorb, what, what is going to empower them to not live in fear and to have the knowledge they need is a very tricky thing and it takes a very good communicator to understand how to deliver that information at various ages.

Seth:                                  22:18                   I couldn't agree more. I think it definitely, you have to communicate it. You have to be transparent. You have to be honest and that's the challenge is you don't know how someone's going to react similar to my situation wants to tell him. My Dad, my sister, they were fine with it. They were like, oh, you know, thanks for telling me. But they're just like how did you hide this? It wasn't like, Hey, I'm mad at you. It's like, oh, thanks for sharing. And they didn't treat me any differently. That's the biggest thing is there's a stigma behind genetic conditions in my opinion, where people don't know how others will react when you tell them and that's I think the difficult part is even having. I don't have children, but being a child of a parent I can relate to saying , like yeah, it was probably tough for them to tell me I'm glad they did tell me I wish they told me more, but now I can help other maybe parents work with figuring out ways to tell their children are making sure that these children wants to knowing about it, are these young people who know about it, that that they're provided those educational content and going to the right places for learning more about the condition.

Janet:                                23:30                   Well, I understand that you've taken your condition, your passion and your desire to really impact others into your career.

Seth:                                  23:41                   I have and it's pretty crazy because. Give you a little bit background. My background is in nonprofit work. I was doing a lot of work previously in youth development, working with under resourced students in Boston and then going to Grad graduate school in Chicago the last few years to get a Master's in nonprofit management and I really thought I would either be staying in Chicago, are moving back to Boston, working for a nonprofit. We're focusing on, especially high school students. I felt like that was kind of my calling of connecting with them, working with them, building that relationship up with them, but then again what happened this past year has been an amazing just experience. As mentioned before. I did this TED-X talk, sharing my story in front of 800 people in my hometown back in January and just kind of took off from there.

Seth:                                  24:34                   I was able to connect with so many other people in the rare disease space. Understanding the needs of young people and then trying to learn about just different organizations and what they do to help support those impacted by rare chronic condition. And that's when actually I came across this company called Inspire who I heard briefly about in the past because they were doing some, this initiative called experts by experience where they would bring in people to share their, obviously their experience of living with a rare chronic condition and you know, next thing you know, I'm working for them. And to give you a background on what inspired does is where a social health online network connecting patients and caregivers to one another anonymously. And what's, what's cool is we actually have staff here who moderate our online communities, 24/seven. So you know, they're taking shifts, night shifts, morning shifts just to make sure to moderate for kind of being that, that online police in a way.

Seth:                                  25:41                   So making sure people aren't potentially giving out personal medical advice. Any type of spam, any of those arguments that go back and forth. We think it's important for people to feel like they can connect with one another and know that they're not alone alone in their fight and we actually have over 100 different nonprofit partners and that's kind of where my role comes in as a partnership's manager is trying to build not only our current partnerships but new partnerships with these nonprofits so that we can build these online communities for their patients and caregivers to connect with one another. Again, that whole idea of being anonymous is something that I've learned more and more about, especially in this role of, you know, you can go to an Instagram, you can go to Facebook, go to Twitter, and I think it's great that there's different social media options, but I think what makes our site unique is that idea of being anonymous.

Seth:                                  26:35                   Idea of having it moderated by professor, by our staff and we're kind of the experts on the online moderation. But that's why we bring into nonprofits because they're the ones with the resources. Making sure that they know where to go when they're looking for educational resources and content or even services that the nonprofit partner may provide. The biggest thing that I always stress is one, I'm not just trying to sell a nonprofit partner on on this, but more importantly, as you know, I've lived the experience. I grew up in a family impacted by the rare disease. I know what it's like. And so making sure that they're being able to have that opportunity to connect with others who know what they're going through. That's the, that's the biggest thing because I didn't, I didn't have anyone growing up until actually to be honest, until about the age of 19 when I was in college and when I was actually a sophomore in college, just turning 20.

Seth:                                  27:34                   Someone who lived down the hall from me in my dorm, said, oh, my friends come and visit. And her mom also had HD. And as soon as I met her, I felt like I knew her for years because I didn't have to explain myself over and over and over again. She just knew. She knew what was going on. And it was just great to know that I didn't have to live in isolation. I had someone else I could talk to about this and of course that grew over time, but that's Kinda why I always say, hey listen, I'm not here to tell you just to do it to do it, but here's an opportunity for those who may want to connect anonymously, like a username, think of like AOL or AIM where you have that user name and then if you want to connect more you can message them or add them as a friend or, or just, you know, you can share more if you want, but it also gives them the opportunity to share as much or as little as you want.

Janet:                                28:25                   I took a quick look at Inspire and I lift up Huntington's disease and I know that there's almost a one and a half million members of Inspire, of which 389 are part of the Huntington's disease community. So when you talk about it being rare, that's amazingly rare. What a great resource to put together people who need to find other folks like themselves.

Seth:                                  28:52                   As you can see with the Huntington's disease community, it's a lot smaller than some of our other ones. And that's because of course Alan doesn't have a nonprofit partner yet. That's something in the works, but I think, you know, when you have that partner you can, they can also help drive people to it and make sure people know about this resource with Huntington's disease. There's 30,000 people in the US who have another 200,000 plus who are at risk. And so yes, I think Inspired is a great platform for Huntington's disease space with other as well as other conditions. But I think when you have a nonprofit partner is going to help drive more people and that. And that's something that I'm really excited to do, especially personally being impacted is, is trying to get potentially other people like myself involved in the conversations within that community on Inspire.

Janet:                                29:57                   You know, one of the things that is happening in my household is that my son has and his father's side of the family have all gotten 23 and Me genetic testing kits now on my side of the family, on the Kennedy side of the family. My Dad's an avid ancestry researcher, so I can tell you that I've got family members that we've discovered all the way back to something or other and that's cool. And so we feel like we pretty much know and understand what's going on on one side of the family. On the other hand, on my son's side of the family, past great-grandfather. They know nothing. They don't know anything who were, when they came over. How many folks are they related to anybody in the world. And so I'm really fascinated with this whole experience and the things you can find out from that. So I'm curious since there's so many sales going on with all these genetic testing platforms related to the holidays, are you all gearing up in January for a lot of folks going? Why I have one getting ready for kind of a rush of people who are now going to start to wonder about some of the things going on in their holiday gift, genetic testing.

Seth:                                  31:09                   I think that that's a great question, Janet, and with the whole 23 and Me and learning about your history of your family, it obviously has its pros and cons, but the challenge with 23 and Me and a lot of these other genetic testing kits is again, if you don't have that one to one service, have a genetic counselor. You're not talking to a specialist. You don't know what those next steps are. That's the biggest thing is when someone learns about a diagnosis or learning about them being at risk for something, you always wanted to look at, well, what's my next step in my journey? And if you can connect with other people who have either already gone through that journey or are going through the same path that you are timeless simultaneously. I think it definitely helps make things, again more manageable, but more importantly I stress on the idea of a jag counselor because again, they're going to help provide that support and making sure that you know what your options are, whether you have a jag condition or not. I think the other challenge, again with Huntington's disease, it's so unique that when you're at risk, I definitely think that it's important to go through genetic counseling because you could test negative, but you might have that survivor's guilt or you might test positive and not know what those what to do next and I really just don't know. It's a tough one to answer, but my thought is if you do decide to go through 23 and Me or ancestry.com or any of those other ones, just make sure that, once you do it, there's no looking back. You can't just hit the rewind button and say, I don't want to do this. I don't want to learn about additional potential conditions I may have or that was passed down from my family. So making sure that you know what, what to expect and know what your options are, not only after doing a book prior to doing it and kind of talking to others about your family, about it, maybe friends about it, professional about it, just so that you know what to expect when finding out the results.

Janet:                                33:33                   I think that is such good advice and one of the things I do want to let people know is that in the show notes we'll have a LinkedIn profile and also a link to the talk that he did at TED-X Natick. I thought that was just a really, really interesting presentation and something that people I think really need to listen to because I liked the idea that you've said about coming out of the chronic disease closet. That idea that you don't have to keep this all to yourself. There are other people who can support and help you and don't suffer in silence.

Seth:                                  34:01                   I couldn't agree more and Janet, the biggest thing is it takes time, but understanding that you aren't defined by the disease and being defined by who you are as a person. And I actually had one of my good friends, his name's Peter, he and I had this conversation because to be honest with, with dating, you know, when you tell them about your condition, do you say on the first date, you know, the six days, six months in, you don't know how they're going to react, but what he told me, he said, listen, you can't talk about it. It shouldn't. It shouldn't be part of your life every day. And, and it really kind of changed my perception of say he's right. Like even though I am doing these public speaking talks and I'm doing a lot of work in the HIV space, at the end of the day I don't need to tell them about it because, and I say that in a nice way. I'm saying I don't need to tell them that that's all I do and that I should be defined by Huntington's disease rather than who I am as a person. And it's really changed my perception on, looking at, at life differently, but it also just helped me understand that it's not about being perceived as, hey, I'm Seth with Huntington's was, hey, I'm Sam, I'm impacted by it, but here I am as this is who I am as a person.

Janet:                                35:20                   That you are not defined by your disease.

Seth:                                  35:23                   Exactly. Not defined by the disease and still trying to do great work. I mean, as as mentioned before, not only doing a TED-X talk, I spoke at global genes talking about the emotional toll toll a condition as a rare disease patient. I actually have spoken in front of genetic counselors, genetic counseling students and Undergrad and graduate. And also more recently I've, I've spoken in front of researchers. And I think that's the biggest thing is how do we bridge the gap? Getting the patient's voice more involved in research, listening to what our needs are and how we can take those next steps to speed up medical progress.

Janet:                                36:04                   Well you are certainly on the right path and I congratulate you for the work you're doing and also for the passion that you're sharing with people because it is through stories that people will really connect with each other.

Seth:                                  36:18                   Yeah, and I appreciate you having me on here chatting. It's just more of an opportunity not for me but just for others to know that they're not alone when dealing with their health condition and knowing that there's people like you and I out there who want to help others and make sure that they hear stories like my own or stories of others on the podcast and just hearing that, you know, even though there are challenges in our lives we're still trying to make the most out of each day and that we can always do more to help others out. We can always do more to make a difference in the health space.

Janet:                                36:51                   Well, you keep at it, Seth, and I look forward to hearing some more about what you're up to in the coming years. You've been listening to the Get Social Health podcast. My name is Janet Kennedy. My guest today was Seth Rotberg and you can find all of his contact information in the show notes. Thank you so much for listening

Announcer:                      37:11                   And now here's a social media success tip.

Mike Sevilla:                     37:14                   Hey, this is Dr Mike Sevilla, family physician and physician social media pioneer and here is my social media tip. Now I got a question a lot. He said, "Mike, you know what kind of gear do you need to be a a social media superstar?" And I tell people it's not about the gear. There's three basic success tips I can share with you. One, you need a very cool social media mentor that you can ask questions to to. You need to have a message. What is your message? What do you want to convey out there in three, what are the goals? What do you want to achieve by being on social media? You follow those three tips, Success you will find.

Announcer:                      37:58                   You've been listening to the Get Social Health podcast. The show notes are located at getsocialhealth.com. To join our healthcare social media journey, follow @GetSocialHealth on Twitter, and start a conversation.

Janet:                                38:13                   Thanks for downloading this episode of the Get Social Health podcast. If you enjoyed our conversation, a review and a rating on iTunes will help us find more listeners. The Get Social Health podcast is a program of the Healthcare Marketing Network, bringing you the best in healthcare communications. Our network includes dozens of writers with a wide variety of expertise and a broad range of medical specialties. If you need blog, website, white paper, or patient facing content, let the healthcare marketing network be your external content engine. For more information, contact me, Janet Kennedy. My email is [email protected].

 

Forced From Home Exhibition

Immigration is on everyone’s mind right now. As with so many current issues, knowledge of how this global social problem impacts individuals is misunderstood or even unknown. Recently I had the opportunity to tour the national exhibition, Forced From Home, presented by Doctors Without Borders during its stop in Charlotte, North Carolina. I was graciously given a tour of the exhibition that included interactive activities designed to convey the challenges facing the more than 68.5 million people currently forced from their homes. I saw a re-creation of a refugee’s journey demonstrating the dangers, deprivations, and uncertainties faced by men, women, and children in the millions worldwide every day.

My tour guides were Courtney Ridgway, Erin Ching, and Dr. George Record. As we walked between exhibit stations, they shared the purpose of the Forced From Home exhibition and answered all my questions. An audio podcast can’t fully reveal how moving this program was, so I hope you’ll visit the show notes for photos from the program and more information.

DETAILS: The Forced From Home exhibition offers free, one-hour guided tours with experienced Doctors Without Borders aid workers. Visitors travel through an immersive exhibition featuring a virtual reality (VR) experience, a 360-degree video dome, and interactive activities designed to convey the challenges facing the more than 68.5 million people currently forced from their homes.

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A wise man once said laughter is the shortest distance between two people. Well, there's no shortage of laughter in this episode with Jacob Weiss, who's the director of High-Wired communities and entertainment that gives back. Listen to the podcast and find out why laughter is the best medicine on Get Social Health.

 

 

Janet:                                00:00                   A wise man once said laughter is the shortest distance between two people. Well, there's no shortage of laughter in this episode with Jacob Weiss, who's the director of High-Wired communities and entertainment that gives back. Listen to the podcast and find out why laughter is the best medicine on Get Social Health.

Announcer:                      00:21                   Welcome to Get Social Health, a conversation about social media and how it's being used to help hospitals, social practices, health care practitioners, and patients connect and engage via social media. Get Social Health brings you conversations with professionals actively working in the field and provides real-life examples of healthcare social media in action. Here is your host, Janet Kennedy.

Janet:                                00:47                   Welcome to the Get Social Health podcast. Today I have somebody who is going to help me solve some personal problems and that is Dr. Jacob Weiss.

Janet:                                00:56                   He is a researcher and a social entrepreneur and he's going to be speaking at the annual conference of the Mayo Clinic social media network that's coming up November 14th and 15th in Jacksonville Florida. His topic is how juggling taught me to engage my community for health and well-being. Well I have to tell you I'm having a lot of trouble juggling and also juggling and engaging my community. So this is going to be a very valuable session for me. Welcome to Get Social Health Jacob!

Jacob:                                01:28                   Thanks thanks for having me.

Janet:                                01:30                   I was flabbergasted when I saw that we were going to have a person with expertise in juggling at the annual conference of the Mayo Clinic social media network and I'm thrilled because I actually have a cousin who is a professional mime, clown, and she has awesome juggling skills. So that is amazing.

Jacob:                                01:52                   Yeah it is. It's going to be a lot of fun for a lot of people don't realize the connections you can make and the AHA moments you get when you bring in something that's a different industry. But where there is a really positive connection that you can make, and building bridges across.

Janet:                                02:08                   Absolutely. And I think some of this has to do with when you send people particularly to a conference or an event where they're expecting the same old same old. And you throw them for a loop. They've got to kind of think differently.

Jacob:                                02:24                   One of the things I love about juggling is it's that physical getting up and moving it's visual it's it's not another PowerPoint slide for example and it and so if you're trying to convey a message or teach or share knowledge you can't just share the content you have to do in a way that keeps them awake. That makes them engage in a way that it's really sticky that they can remember back to it when they want to use it. So that's one of the powerful ways that we use juggling as part of sharing content and real knowledge as well.

Janet:                                02:57                   All right wait a minute I'm very easily distracted as you'll probably discover in this podcast interview. However, I'm envisioning you being up there and juggling three to five balls and all this awesome stuff is going and your and you're imparting words of wisdom.

Janet:                                03:11                   I gotta tell you I'm going to be totally focused on your juggling skills and I'm not going to be listening.

Jacob:                                03:16                   Fair enough. And I will give you a preview that most of the time that there's talking. It's not at the same time as the juggling so that the juggling will make you can enjoy it and have fun with it and then we use the other parts following before and after to connect when there's a metaphor or sharing a story of what I've done with juggling and community and building healthy communities using both juggling and social media. So it's it's not the distracting part it's the get you focus then you can listen.

Janet:                                03:51                   Well now folks know me as a social media early adopter and somebody who uses it probably to the point where they like Janet you need to take the day off. But I'm trying to put together my idea of social media and juggling. Well, the first thing of course is that's all social media is I am I am bouncing from one thing to another trying to keep all my content up in the air respond to things like there's a perfect metaphor for there. But what you're actually saying this is a physical metaphor as well.

Jacob:                                04:22                   There's the metaphor of keeping the balls in the air. And one of the things I talk a lot about is you know it's a marathon not a sprint when you're learning to juggle. You don't drop a ball and give up in two minutes and say I can't do it. Same thing with social media. You're getting started on that whether it's a new career path or a new project with social media. You don't just try something and say Oh did it work. I'm quitting it. It's really that long-term goal and process which is the same as learning to juggle. So you've got those metaphors. But there's also a real physical mindset shift that you can make a connection to while you're actually physically learning to juggle. And so it's not just a conceptual metaphor but it's a physical experience that you can go through that that you can make connections to when you're working on those other areas of your life or work.

Janet:                                05:19                   All right let me ask you something and maybe this is why I'm not very good at juggling and I can't get past five passes the ball is because I'm always thinking about the ball's going to land here the ball's going to land here and the ball's going to land here as often we do and work of I'm going to do this again to do this again this which means everything just becomes a blur. Am I doing juggling wrong?

Jacob:                                05:41                   I would say you're doing juggling wrong a lot of ways if you can. One of the ways we teach for example when we're really teaching getting past the first couple of throws is to stand over a table or a desk and let those next. Those that you're trying to get to hit the ground right it lands on the table. Then you have infinite time to make the next throws after that's already landed on the ground. And it also helps you get past worrying about the drops and really focusing on that. So it's it's like with work when you're working on social media or any really any work or or project it's its focus on what you can be getting done now not worrying about the next drop that could happen and end. And then you get to that as it comes. And so it's juggling it really is almost like a yoga or meditation is that sense of flow. You have a feeling of when it clicks in.

Janet:                                06:39                   I will say the other part of the metaphor that I really like that a lot of clients or big companies or even healthcare organizations have to grasp is that you're going to drop a ball and in social media, you're going to spell something wrong. You're going to have a link that didn't work that you've got to repost because when you think about the volume of what you're putting out and the speed at which you're putting it putting out if your social media is all 100 percent planned vetted reviewed edited and signed off on it's boring. You know that's like picking the ball up and then picking the ball up and then picking the ball up as opposed to ball hand, ball, hand, ball.

Jacob:                                07:16                   Exactly along the lines of what you said in terms of that's boring people connect on social media. It's not a press release. Right. It's that you're connecting you're having real conversations with real people. And same thing when you watch juggling. I often when I teach other performers they're not watching the balls in the air they're watching you having fun with the juggling onstage and it's the same with social media. It's not just the announcement here announcement their content they're engaging with you and your personality and that has to shine through in a genuine way. Again it's the same thing if you're performing on stage five hundred people as if you're have five hundred dollars on social media that you're engaging with. It really just has to come from a genuine place from you not just what is the content that you're share.

Janet:                                08:07                   You know I can talk about juggling forever but at some point people are going to wonder why are we bringing a juggler to this conference and actually you get some letters after your name and you have some established academic credibility to this work you're doing so tell us a little bit about your background and how you managed to bring this childhood love of something all the way through your academic career.

Jacob:                                08:30                   Sure. Apart from being a juggler since I was about 10 years old I went to Princeton University for my undergraduate and I was focused on computer science engineering where in addition to developing computer-controlled juggling musical instruments that I've played while juggling with sensors I also developed in the pre-Facebook days Facebook-type friends list connecting sharing kind of building between aim AOL Instant Messenger and Facebook world and of bridging the gap and working on projects and developing concepts from that from the computer science and I then went from there to Vanderbilt University. I did my Ph.D. in biomedical informatics where I was taking a lot of that approach to social networking and the healthcare focus. And when I got there it was there was a really strong emphasis not just on the medical record as in information repository but the medical record as a communication medium between the doctors and the patients and the nurses and everyone involved and so that really was a powerful connection to what I was excited about and that was a time when a lot of things were you know how do we email doctors not even considering anything social media.

Jacob:                                09:53                   And so a lot of my research was you know in the first iPhone came out. We were developing projects around medication management for kids using the early iPhone before you could even make official apps for it. And so all of my research has really been about how do you connect people online but offline as well.

Jacob:                                10:16                   So a big part of my focus and from that world is not just thinking about social media as something in it by itself it's something that can also enhance and complement real-world relationships. Right. So if you can have patients all around the world talking. And that's an important part of social media. But you can also use social media to coordinate emphasis with conversations that also happen in the real world. Whether it's between the patient and the care team whether it's in a local support group or which a lot of my work was looking at all of the different nonprofits working in health care in the local community who are very siloed and disconnected.

Jacob:                                11:02                   How do you find ways to create more connection between them and so did you immediately go into founding your own company or did you work in that traditional bioinformatics program somewhere.

Jacob:                                11:16                   Yeah it was it was pretty much right from my Ph.D. starting my own thing in part because I had continued while I was at Princeton I started up the student juggling shows on campus while doing my research. And when I got to Vanderbyl I started up the juggling group and shows on campus there. So I'd always been doing a combination of starting up juggling programs and creating social networking for community building and health care. And so there was no one job that equally considered both of them. There might have been one or the other and they said oh yeah you can do that little stuff you do on the side with you can't do this while doing that. And so. So it really wasn't it wasn't something that I really purposely went into. It's just continuing what I've always been doing really organically growing and so just kept going and applying a lot of my research work more on consulting or project-based work and then starting up a touring juggling performing company.

Jacob:                                12:23                   At the same time that's a social enterprise. So we use that juggling and just like my research to create connections between nonprofits between companies and local nonprofits. And so it I sometimes describe even from the juggling side and doing more in line with my research than if I stayed in the field in academia doing what most informatics is focused on. Because my research really was combining the informatics work with community based participatory research models ethnography. How do you bring together a local community for collaborative design of an online space so it wasn't just how do we use the online space to us? How do you bring people together to collaboratively design an online space people who aren't social media experts or designers? And how do you make it something that from participating they learn at the same time and can go back to their organizations and enhance the work they're doing online themselves. Have you actually published your dissertation part, not the full dissertation? However many of these are papers but papers out of it. For sure.

Janet:                                13:38                   Okay. And is the word gentling used in near doctoral dissertation?

Jacob:                                13:42                   Well I don't think I have to think I don't think the word juggling ever specifically appears but I will say several of the conferences where I presented that for informatics there was juggling involved in those presentations and in my dissertation defense I believe there was juggling involved.

Janet:                                14:02                   Oh wow okay. So my the really big question is does your mother say my son the juggler or my son the doctor?

Jacob:                                14:11                   I would say sure. It depends on the context. I think mostly she'll say my son the juggling doctor but she actually works in medical informatics as well. That's what got me introduced I'm interested in that field. And so she gets that part of it. But she also has been around since I was a kid so she knows the other half from the juggling side. And again it's from the outside it seems very different. But if you think about it what I'm doing with everything I do is bringing people together and finding ways to connect with people and connect people to one another. And there's a quote I like that came from Victor Borge -

Janet:                                14:58                   I love Victor Borge!

Jacob:                                15:00                   And it's "laughter is the shortest distance between two people." And that applies to what we do with our juggling performances and the outreach we do when we go to children's hospitals and in the community. And it also applies to social media and making real genuine connections on social media. It applies to what we're doing in the community and building real relationships when you facilitate conversations in a community. And so I don't think it's anything that's completely different. They're both two parts of that same mission of bringing people together.

Janet:                                15:39                   When I look at your LinkedIn profile I see that you actually have five concurrent jobs a year there from X to present. So. Oh my gosh, what exactly do you do for a living?

Jacob:                                15:52                   So again the concurrent it's all part of all of the pieces that you see on LinkedIn where they're all the different pieces and programs that we're doing with the companies that I started. So technically there's two company the informatics social media community building consulting and the other is the juggling performance side. But a lot of it weaves together in different ways. And so for example one of the programs that we're doing that we just launched this past year it builds on what we've been doing with our touring performances and outreach and just really quick with that the model as a social enterprise it's kind of like that Toms Shoes model if you know where every pair of shoes you buy they donate a pair of shoes to a child in need with our live performing. Every time our show is brought in to a corporate event we donate a visit to a non-profit in the community and we just launched a program that not just it's not just our visit out in the community that's really and we see the impact it makes but we're able to donate excess of juggling balls as well to the different programs because again the juggling it's the fun as the play.

Jacob:                                17:06                   But it also helps people connect with the mindset going from an I can't do this mindset to oh I can do this. We have a path to success. A message that says try drop, try drop, try drop, over and over down the page. Pause. Breathe. Try. It will succeed. And when people learn to juggle they can connect to that mindset and apply it to other things that they're doing. So that's the that's what do good and juggle is. But all of them are part of the kind of core companies that I've started.

Janet:                                17:48                   So what kind of companies are bringing you in, and do they know what they're getting ahead of time?

Jacob:                                17:54                   Oh yeah, well some companies will bring us in for the entertainment and then as a talking and they realize that I have my Ph.D. in healthcare and technology and also are giving back elements. Then we start talking even more about that piece and then some people are looking more for the community building consulting or corporate training or leadership. I teach a course on community engagement and leadership and end up bringing the juggling and improv comedy techniques and storytelling into that process of the class there and so sometimes people come from one direction and get the other and then it can be flipped depending on who the client is. But we did we do kickoff for a large healthcare companies technology companies conferences and we've been to the White House Madison Square Garden. So from the performing end we do that side and then from the training side we've worked with a lot of some of the major marketing companies, for example, brought us to work with their teams as well as incorporate giving back elements so sometimes companies will bring us in when they're trying to do something that gives back. But there's also a team building or fund program for their employees as well.

Janet:                                19:12                   Oh that sounds like a lot of fun when you were telling me before we started the interview what your schedule is like over the period where the conference is going on. I was sort of mind boggled. You have to have somebody who says Not today if it's Tuesday it must be Belgium.

Jacob:                                19:30                   Right. So yeah we've got at least three possibly four. If I do something locally in Nashville that just came in that week. So basically from Sunday Sunday three different cities which is not always that crazy but it definitely can get a little hectic with that.

Janet:                                19:47                   Now what exactly is an entertainment? What is your show like? I mean no lions no tigers no trapeze. So what exactly are you doing? Is it a circus event?

Jacob:                                19:59                   So at the conference, I'll be I'll be doing some incorporating some of the performance acts from our touring show and more so doing a lot of talking and making that connection to social media and healthcare and community building with our touring show. We also do that by itself where it's an hour to 75 minutes no speaking. It's a three-person show sometimes. And people have compared it almost to Blue Man Group without the crazy makeup. If that makes sense. It's no speaking it's got a lot of musical elements juggling physical comedy but really it's just the three of us having fun onstage together and sharing that with the audience Dave juggles fire. We don't juggle fire in the show. I can and have but are are most of what I do with the performing it's more about the creativity and the teamwork than it is about the danger elements.

Janet:                                20:56                   All right. This is going to be so exciting and it's really going to catch people by surprise. I think this is going to be a great event.

Janet:                                21:04                   And I know that it sounds like you're doing some really amazing things when you go to say do a corporate event you've got this pay it forward model where you're doing something is it hospital visits are you doing fundraising shows?

Jacob:                                21:20                   Some of it's been more into the fundraising style. Most of it is more going out into the community like to the hospital and visiting with the patients doing a show in the lobby for the patients and the families and the staff even which I think that's an important part of wellness for the caregivers and the staff and ignoring that element. And so we'll do that we'll go out into a local school for example. And and so just giving you an example sometimes that if the client really wants to plan a big event that ties into a charity that they're trying to support then we end up doing that if that's what their interest is. But sometimes it might be just visiting, for example, local Ronald McDonald House and there is an example of an event we did. And we went. We went to the local Ronald McDonald House and it was pouring outside.

Jacob:                                22:18                   And so most of the families were stuck in the hospital and couldn't get back to the house. But there was one family. It was the husband and wife whose child was in the hospital but they couldn't get there because of the rain. And so we ended up just doing a short show in the living room for that couple and taught them to juggle. And it wasn't what we planned in terms of how many people were going to be there. But on the way out and we were leaving and the house manager told us that was exactly what they needed at that time. And so we've had other people with our outreach describe how they haven't left together as a family and over a year and that this was a way that they were able to do that and connect us especially if they were in the hospital or dealing with a challenge like that.

Jacob:                                23:10                   So so that's our outreach. It really can be tied into the client wants to focus on health care education and we'll work with them. But we just see the power and impact that it makes. And that's something that came from my work. The first outreach we did was working with a lot of the Cancer Support Programs Gilda's Club here in Nashville is an amazing program and we've worked with them. And I got to know them from when I was doing my research and working with the cancer center at Vanderbilt. And so we've found ways to do programs for them. And so most of it's less about the fundraiser elements and more about really making that personal impact with the families who need it.

Janet:                                23:57                   I love all of this and I love the fact that you're maybe the first person I've ever spoken to that had a passion as a child that they have been able to carry through their whole adult life and into their career. That's awesome and cool.

Jacob:                                24:12                   And I will say it was not planned. If you asked me when I was doing my Ph.D. and doing this student shows at the same time if I plan to be a professional juggler in any way and I wouldn't have said so. Actually, when I first got to Princeton I had no interest in performing I was just juggling I didn't think I had time for it. And then it just gradually evolved. And so it's it's been very organic and not scripted in and how I want to incorporate it and that I've always dreamed of being a professional juggler since I was a kid. But it's been something that's been a solid foundation and core to everything I'm doing.

Janet:                                24:53                   All right so where do you go for professional development?

Jacob:                                24:56                   You know some of the people that I work with for example who do storytelling and storytelling as a way to see different ways to think about things whether it's strategy or opening up connections. And so those kinds of those partners that I work with but also learn from at the same time there's a lot of people that I look up to both from that and then there are people whether it's in the fitness industry and they share advice and messaging around for example. You know trust the process which is a message around their fitness but it's also a message for careers my career for what we're doing with how we teach the juggling.

Jacob:                                25:41                   There's a lot because it's the typical industry where you go and take a professional development community building and juggling and healthcare technology all woven together. I kind of get it piece by piece. I do a lot of reading and listening to podcasts and following people look up to from that an awesome.

Janet:                                26:01                   Well OK. Is there a great circus podcast you'd recommend?

Jacob:                                26:05                   I don't follow too much circus podcasts. I would say more from I would say the marketing. There's a lot of videos that you know keep up with people posting videos from the circus and juggling side through Facebook and you know that network and I follow more of the marketing podcasts and healthcare and those side of things as well.

Janet:                                26:29                   Now you've got to have a guilty pleasure podcast. So is it serial killers or True Crime or history?

Jacob:                                26:37                   No I don't. I haven't really gotten into that side of podcasts listening although I would say that part of everything in terms of what I do free-time wise my wife and I have our 21-month-old at home. So everything's been a blur for the past few years now.

Janet:                                26:57                   I can't imagine. All right so just so you know this is a parent tip here when your child is 22 months old. Measure them double their height and that's how tall they'll be as an adult.

Jacob:                                27:08                   Interesting.

Janet:                                27:09                   Not 24 months.

Jacob:                                27:10                   I will look at that. I will look at that.

Janet:                                27:13                   I did that for my son and lo and behold he did grow up to be 6 feet 4 inches tall. So.

Jacob:                                27:19                   Well my wife's mother is six feet tall and so maybe our daughter will get that side of the family but who knows.

Janet:                                27:26                   There you go. Well I am so looking forward to meeting you in Jacksonville and a hearing watching and sounds like actively participating in your program. It's going to be a great event.

Jacob:                                27:40                   And I'm going to have a lot of fun. And look forward to seeing everyone there and always feel free whether you see me at the conference to come up and say hi and mine. Always happy to connect and look forward to meeting everyone.

Janet:                                27:54                   That's going to be a blast. All right I'll bring my own juggling balls and I will see you in a few months at the Mayo Clinic annual conference of the social media network. It's taking place November 14th and 15th on the Mayo campus in Jacksonville Florida. If you happen to be new to social media and or health care there's also an all day program on the 13th which is called the social media residency. So you can really get up to speed no matter whether you came from the journalism marketing side of the house and need to learn healthcare or you come from the healthcare side of the house and you're not that experienced with marketing and social media. That is a great intensive daylong session that you will walk away from with practical and tactical ways to manage your own social media. So I encourage you to look into that as well. Social media dot Mayo Clinic dot org is the place to find this information. Again Jacob thank you so much for joining me and I look forward to seeing you soon.

Jacob:                                28:52                   Thank you.

Announcer:                      28:52                   And now here's a social media success tip.

Lee Aase:                          28:57                   Hi this is Lee Aase. I'm the director of the Mayo Clinic social media network and happy to share one of my favorite tips and that is to don't overcomplicate things. I know that in some of the early days with the flip camera many of the complaints that people had was an audio quality. And so they would often look for a camera that could have an external microphone and that would sometimes complicate things to the point where they didn't shoot the video that they could otherwise abused. So one of the rules that I live by is that you can't edit what you don't shoot. Wow, I agree it's great to get external microphones. I'd be focusing on some of the shotgun ones the ones that can attach to a bracket with the iPhone or Android phone but not to get overly complicated. Look at what you can do in terms of natural light as well as finding a good quiet place to do the interview so that you don't get hindered from actually shooting the video. That could be really helpful for your communications purposes.

Announcer:                      30:07                   You've been listening to the Get Social Health podcast. The show notes are located at getsocialhealth.com. To join our healthcare social media journey, follow @getsocialhealth on Twitter and start a conversation.

Janet:                                30:22                   Thanks for listening to the Get Social Health podcast, a production of the Healthcare Marketing Network. And a proud member of the Healthcare Podcasters Community. I'd like to take a moment and tell you a bit about the Healthcare Marketing Network. We're a community of freelance healthcare writers. Our organization can match your company or healthcare practice with clinically accurate, specialized, or general health care and medical content, from blogs to white papers to CME, the Healthcare Marketing Network has the writers you need to reach your business audience or patients. To find out more visit healthcaremarketingnetwork.com or contact me via social media or email at [email protected]. Thanks for listening to the Get Social Health podcast.

Marie Ennis-O'Connor is a social media consultant for healthcare and pharma. She visited the Get Social Health podcast to talk about her upcoming presentation for the Annual Meeting of the Mayo Clinic Social Media Network. Marie visited the Get Social Health podcast 3 years about as a "must follow" social media expert and that is still very true. Listen to the podcast here or drop in at the time stamps below.

 

Janet:                                00:00                   One of my go-to healthcare social media consultants is Marie Ennis O'Connor. She's a wonderful person who's been on the podcast before and is very savvy about how to craft, must read headlines and compelling content for social media and you know that's a challenge we face every day. Find out how she does it on Get Social Health,

Announcer:                      00:22                   welcome to Get Social Health, a conversation about social media and how it's being used to help hospitals, social practices, healthcare practitioners and patients connect and engage via social media. Get Social Health, brings you conversations with professionals, actively working in the field and provides real life examples of healthcare, social media in action. Here is your host, Janet Kennedy. Welcome to the Get Social Health podcast.

Janet:                                00:50                   Yay. I'm excited to have a friend of mine back on the podcast, Marie Ennis-O'Connor was with me a couple of years ago and a lot has happened in social media marketing and the online healthcare world since then, so it's going to be exciting to catch up with her, but even more exciting is that I'm finally going to get to meet her in person because we are both going to be at the annual meeting of the Mayo Clinic Social Media Network. It's going to be taking place at the Jacksonville campus of Mayo Clinic in Florida on the 14th and 15th, and if you are relatively new to healthcare social media, you may want to think about joining the residency that takes place on the 13th the day before, so it's a great three day conference. You're going to meet some amazing people, not the least of whom is Marie O'Connor. Welcome to the podcast, Marie.

Marie:                               01:41                   Thank you, Janet. I think I'll get you to do that introduction for me when I'm in Jacksonville, so that was very nice. Thank you.

Janet:                                01:47                   I might get to because I was asked to be a moderator in one of the rooms, so if I'm near you, I might get to do your interview. However, to folks who may not be familiar with you or haven't had a chance to listen to your previous episode, let's catch up and let me tell a little bit about. Marie is a digital communications strategist and she is an internationally recognized keynote speaker. She's in Ireland, so it's not as far a jaunt from here, but she's going on her fall conference circuit, so by the time you get to the Mayo Clinic event in November, you're going to be well-packed and well traveled.

Marie:                               02:27                   I imagine. You know, I have a suitcase that I keep packed all the time. When you travel like that, you do have to start getting very strategic about what you bring and yeah, so I've got it down to a fine art now. I did have a consultant that used to work with me when I was in the shopping center industry and she always packed 100 percent black everything, so she never had to worry about anything matching. It was just all black, I think a little depressing, but that certainly does simplify your travel. Yeah, no, that's good. And I will, let's not get too much into, into fashion, but I just wear dresses because I just find they roll up nicely and they just always look fine. So that's just my advice.

Janet:                                03:17                   Marie, what have you been up to since we last spoke?

Marie:                               03:21                   I am more than enough with social media than I ever been even the last time we spoke and I love to be able to say that. It's just, we're learning all the time where we're doing new things, we're trying new things, working with new clients. So I'm just more in love with social media than ever. I'm doing a lot of travel, which is wonderful. I get to meet some new people and I'm still loving this. Introducing people to the real power of social media. What's interesting, Janet, I think even. I'm trying to remember back to what we talked about before. I'm still quite amazed that even these several years later we're still having to almost go back to basic principles and explain what is social media, what is digital marketing and there's still a lot of misconceptions around that. So I like to put people straight and I like to.

Marie:                               04:10                   I guess my background is in public relations, so I always go back to a real grounding in real communications and you introduced me as a digital marketing communications. I can't even remember what I said I was and it's because I still think sometimes social media has got this reputation of well we just put up a few tweets or we'll just put up a Facebook page and they're so, so much more to us. So I guess probably one of the challenges that I still face is really getting that across to people is that there is so much more about doing social media or using social media, it's about how to do it strategically. So that's been my life's work and that's what I've been doing for the last couple of years or however long it is since I spoke to you and I'm still finding it fascinating.

Marie:                               04:53                   Well I think what's interesting about your perspective as well is that your in Ireland, so you're kind of halfway between the US and Europe and you have clients across all those continents, correct?

Speaker 3:                        05:06                   That's correct. And the wonderful thing is people don't actually know I'm in Ireland. I always have to start off when people invite me or asked me to go on a call, I always have to start off with, well, you know, I am in Ireland. They go, no, I didn't know that. I thought you were in the US or I thought you were in Australia or I thought you were wherever. But I think that's the amazing thing is that you can be anywhere in the world and you can give that one world class service.

Janet:                                05:27                   Oh absolutely. And it also means that you have to really learn how social media is being used in a lot of different cultural and more importantly governmental situation. So where in the US, you know, we're just starting to feel the GDPR type of situation. You were deep in it this year over in Europe.

Janet:                                05:49                   Yeah. It almost became a Y2K thing. People got very worried about it. But it's basic good governance. If you sign up to a newsletter, if you take somebody email, you follow these steps that people can opt out very easy. I mean it's good practice. So I'm delighted to see GDPR come in, but you know, yeah, I think probably there's a little bit more email spamming coming from the US, but we're all going to start leveling off with that. I think that GDPR is something that's incredibly important and I think we are going to see that as well coming through across the world. Continental.

Janet:                                06:27                   Absolutely. It's just the best practice to follow it regardless of whether you're legally obligated to.

Marie:                               06:35                   Absolutely, absolutely. I would have always practiced it anyway, even before GDPR came in. So it was great to see GDPR coming in. I'm still amazed at the amount of people who didn't comply with this, even though there's a lot of fines and very high. Fine. So we'll see. We'll have to see what's going to happen with that.

Janet:                                06:51                   Now, what type of clients are you working with? Are they health care systems? Are they pharma companies? Are they health tech companies, health tech companies and pharmaceutical industry?

Marie:                               07:01                   So a lot of healthcare startups, and the pharmaceutical industry, the pharmaceutical industry. I'm working more or less in social media marketing and more in terms of patient engagement. So I wear two hats, which I really, really enjoy as well. Well, you know, you're on the board of the patient empowerment foundation and I'm not sure what that is. So tell me a little bit about that. So the patient empowerment foundation is really about empowering patients. It's about giving patients a voice. Let's say there's a conference, we have sessions at the conference where patients can network niche but can really get access to the information that they need, so it's about showing patients that they have this role to play and helping them to get the most out of a conference or get the most out of them out of the healthcare system. So it depends. It depends on what patients need. If it's an individual patients or patient groups and that's the kind of work that we're doing.

Janet:                                07:59                   Are you finding that conferences are more aware of the need to say underwrite scholarships for patients to be able to attend their conferences?

Marie:                               08:08                   You know, yes, but I find it very interesting that there's still so many conferences that aren't, but what I find fascinating is that they're almost being shamed into providing those scholarships. There's the patients included accreditation which conferences can get if they provide that scholarship, if they make it easy for patients to attend on. We're, we're definitely moving towards that. So it's quite interesting sometimes to see, and this is, this is the part of social media that I don't think conferences often get. The organizers now put a Hashtag up there, they'll say come to our conference and if they haven't made it easy for patients to come and it's a natural place for patients to come, they will quickly be called out on social media, particularly on Twitter about it. So it's quite interesting. And they are in, they are shocked to be called out on this.

Janet:                                08:57                   Well a little public shaming. Not that I'm a fan of it, I clearly don't like shaming by parents of their children. That's just so wrong. And that's, that brings up the ugly side of social media, but definitely a respective call out to say, wouldn't it be great if patients could be included in this conference and then see what kind of response you get.

Marie:                               09:21                   Yes, absolutely. And, and you've touched on that there. There is an ugly side to social media and I think that's something that we do need to address and talk about and how do we deal with that? And it's something that's quite interesting and it's very off putting for a lot of organizations. So I agree with you. There's a way to do that. There's a way to open that dialogue rather than jumping in there and saying, I don't see any patients. Where are the patients? And it becomes this, this confrontation.

Janet:                                09:46                   Absolutely. Well, the interesting thing is here we are busily talking all about social media, but it's your writing side that you're going to be featuring as a speaker at the Mayo Clinic annual meeting of the social media network. So let's talk about that a little bit.

Marie:                               10:01                   I was going to say that, you know, it's one of the most exciting things for me. When I was a little girl, I always wanted to grow up to be a writer and it didn't happen for me. And yet through this social media, through communicating, I've rediscovered this love of writing again. And that has been really, really personally fulfilling part of the work that I do. So I'm excited to be sharing with people what I've learned about writing, about how you communicate about how you get more people to read what you've written because it's very disheartening when you've poured your heart and soul into something and you realize that, well, nobody's read it apart from your mom or your best friend. So, you know, there's a little little techniques which I'm looking forward to sharing the annual conference. Well, excellent.

Janet:                                10:45                   Well, I'm going to tell you right now that you're going to have to write the title for this podcast. So let's talk about that because your topic is actually crafting must read headlines and compelling content for social media. So I'm assuming blogs, but also, uh, we're talking about other content as well?

Marie:                               11:02                   You know, blocks primarily. I am such a huge fan of getting quality content out there. So be that blogs, be that, even doing that Facebook live, it's even how you title that. It's the content that you want to share. And really at the bottom of all of this is what do your audience want to hear? And that's the content you should be creating. Open out here, I don't know what to say, and I say, well, what do your audience need to hear from you? What piece of expertise do you have that will be so valuable to share with your audience? So whichever, whether it's a podcast, whether it's a video, whether it's a blog, whether it's part of the Twitter chat, what is that content? So all of that great content begins with discovering what your audience wants to hear.

Marie:                               11:47                   All right, we're going to break this down a little bit. So let's use this specific podcast as an example. I have a Marie Ennis O'Connor, who has a known online social presence. We're talking about the Mayo Clinic's annual meeting of their Social Media Network, and we're talking about a great presentation about crafting must read headlines. Well, gee whiz, which is the most important part? How do I figure out how I should lead with this podcast title?

Speaker 3:                        12:17                   I would do? I love Gdpr. Janet, I'm not sure how much of a Twitter person that you are, but I will often do some preliminary research on Twitter. I will ask people, in fact, the very title when I was debating the title with Dan, him and we were going back and forth and some titles and I said, you know what, why don't I just put the question out there, why don't I ask my followers on Twitter, my Linkedin group, my Facebook group, why don't you just ask them which of these titles would you be most interested in coming to a talk? And they voted and they gave me the title. So I always say ask your audience. And so that's, that's how I will always start with something. I always crowdsource ideas. I'm going to rise pretty in depth article. I'll ask my community what are their best tips and I'll always share them as well. so I'm almost doing the. I'm almost amplifying a know how I'm going to promote what I've written if I start with asking the audience because they will also want to promote that and amplify what I've read.

Janet:                                13:16                   Oh, fascinating. Now, how much does a keyword research play into your decisions on titles?

Marie:                               13:23                   It should play more. It should play more of a role than it is because I teach how important it is and it absolutely is important, but sometimes people get too hung up on that and it can almost stymie them, so there'll be obsessed with putting the right keywords in there, so I always say do that keyword research, but don't get too hung up on this and I find that with the keyword research, I think one of the really interesting things that I've discovered in the last year or so is if you do a google search, it's what people also searched for appears at the end in sentence form in the more natural way. So instead of you would ask maybe how do I write such and such a title? How do I write awesome titles, or how do I write a titles that will attract more readers and so I will build around those rather than just a specific keyword.

Janet:                                14:12                   Oh, okay. That's a great tip. Well, when we talk about what you're going to be talking about at the annual meeting, what kinds of things are you going to be focusing on?

Marie:                               14:23                   I'm very much going to take it back to that basics, what I was saying, which is what are you going to write about? How are you going to find out what your audience wants to read about? So you go and ask your audience and then you do a lot of listening. Maybe you go into Twitter chats and you see what are the topics, what are the questions people are asking in those Twitter chats? If you go into them, what are they asking in Facebook groups? What kind of questions are they asking on blogs? So you can read your favorite industry blogs, shoot down to the questions and see what have they not answered in that? What other questions are people asking? And then you go and create that content? So I'm very much a fan of that, about not just writing something without going and doing your research first, and I always start with that.

Janet:                                15:07                   Well, you know, I'm going to take the devil's advocate viewpoint here as I envision busy hospital because the majority of the folks who are going to be at this program are members of a hospital marketing or communications team. When I envisioned this sometimes very thin team the're, I dunno, what I'm sensing is they are more focused on here are the messages I need to push out as opposed to what do people want to read. So they're coming down with, you know, the people above them saying, I we need to talk about this new doctor. We need to talk about this cardiology procedure. We need to talk about our brand new nursing wing, blah blah blah blah, blah. Do you really feel that hospitals are actually taking the time to do this kind of research and to ask their audience what they want to read or are they just trying to take their agenda and make it as friendly as possible?

Marie:                               16:01                   You know, I think it's even more important that they do take the time to do that research. And where I'm going to come back to what I say, time and time and time again when I work with clients, if you're going to do it, then you need to do it well and you need to do it strategically. So why should somebody care about your new hospital wing? If I. I'll go back and play devil's advocate back to you. You need to say why should they care about it? Just because you have news doesn't necessarily mean that the world wants to hear that news or is interested and how much use do we hear how many hospitals are telling us about their new research or their new hospital wing or their new staff member. We're bombarded with that information so we need to take deeper or that information is only going to interest a very select few. And I guess as well, that's also the dilemma that I find when I'm trying to explain to people what social media is about.

Marie:                               16:55                   It's not about that newsletter that you used to send that with, here is our latest news. It has to go deeper than that. It has to go wider than that. So I'm going to be quite strong about that when I speak about us.

Janet:                                17:08                   Now, how about from the standpoint of developing content calendars? Are you going to walk through some of the basics of a of a content calendar?

Marie:                               17:16                   Yeah, sure I am. I would do that a lot with clients as well. We need to map out in advance because we can start off with social media and everybody's very enthusiastic and then I'm sure as you know Jonathan start petering out and petering out, but if we have that content calendar and I like to go depends on the client, but monthly or quarterly and we've mapped it out, then we know there's always something there that we can draw on. I'm also a big fan of having, when it comes to Twitter, having a tweet bank, having boilerplate tweets that you can draw on. Having it all there documented is hugely powerful and it really focuses you as well. So if you're looking what's coming up in the next month or the next quarter, what are the disease awareness days? Maybe Is it National Doctor Day, is it International Nursing Week and what can we do around that so that that's essential. It's absolutely essential to have that mapped out in advance and have that calendar sewn up.

Janet:                                18:14                   Well, now he's just going to ask you that about, is this heart healthy month? Is that lame? Is that something that, well, everybody's doing it. That doesn't make my content unique or original. How do you work with clients to take it to that next level or to look at the same old same old topics and given new spin to it.

Marie:                               18:34                   You know, I agree and I'm going to go back and say it again. I go back and I will look and see what's everybody doing and what's missing from that. What if people knock covered? What kind of questions are on Reddit or Quora or on Twitter chats? What are patients asking, what are they not already hearing, and that's the content we need to be creating. And then I'm also a big fan. People still love graphics and infographics are still hugely popular. They've got a high high sharing race, so I will do a lot of work around visual content when it comes to that and creating those graphics and those infographics about telling the stories about bringing what's happening within a hospital or within a health care facility. Really bringing that out into the public so that people can really see who are the people that are working in this area. I agree with you that we're almost over-saturated with these awareness days, but we also have to get in there and show that we're part of that as well.

Janet:                                19:34                   One of the things I'm really interested in is this concept of storytelling, and again, I go back to that very stretched thin, lightly staffed content department to tell a story is a lot harder than one would think both from the skills that are necessary to be able to effectively tell a story, but also to find a story in a busy, busy hospital where it's probably hard to get a hold of people. So how do you go about coaching? Finding those good stories and what to do with them.

Marie:                               20:08                   I think if you go out and looking for the stories, that is quite difficult, but if you start early enough, if you start gathering those stories, if you start embedding that idea that we are a storytelling organization and those stories start, you start looking for the stories then in a more natural way and then you collect those stories and an, a story doesn't have to be an interview, it doesn't have to be written piece. I mean really a picture does tell a story. So there's incredible moments where you might be able to take a picture. Obviously we will also need to talk about the, the ethics of that and, and having permission to use pictures. But sometimes that photograph, sometimes, that moment is there. So it's about getting into that mindset of finding those moments, those storytelling moments. but it's almost a cultural change as well.

Marie:                               20:58                   So it's, it's very much about getting people thinking like that, looking for those stories, sharing those stories among themselves and thinking in terms of story. But everyday is a story. My Gosh, I think when we're working in a healthcare organization, I've also worked for some B, two b companies and that's a lot harder, but when you work in healthcare, we are surrounded by stories 24 hours a day.

Janet:                                21:23                   How often do you encourage a healthcare systems to look outside their own walls for stories?

Marie:                               21:30                   That's a great question. And you know, item of tour that I ever have, so if you stumped me with that one, that is such a great question. Yeah, I haven't got an answer to that one. I haven't done it yet. So get ready. I'm going to ask it when you're at the annual conference in November, so I'll be ready for it then.

Speaker 3:                        21:52                   Well, tell me a little bit about, uh, the kind of work you do with clients. Is, uh, is it predominantly strategic? Are you actually doing execution?

Marie:                               22:00                   I am doing execution as well, but I, I love the strategic part and I tend to do the execution part to get people started on, on a good footing, but then I will pull away. I will train somebody up in the organization or I will recommend that they employ somebody who will be the digital marketer, the social media person, and I will interview that person because I'll have a good idea of the company culture as well at that stage and who will fit back company culture. So yeah, I'm much, much prefer that strategic side of it, but I'm also really, really happy to get in there and just do a little bit of execution as well. It's easy for me because I love social media.

Marie:                               22:37                   It's never a chore. But yeah, it's, it's very much about getting that culture of social media started within an organization.

Janet:                                22:45                   I always wonder about the social media strategist who's "do as I say, but not as I do," who doesn't have expertise. Actually posting things, scheduling things and looking at. I'd posted this. It didn't do well. I wonder why,as opposed to being a little bit on the 10,000 foot level. It's easy to preach and it's easy to point fingers, but if you're not in the trenches going, oh my God, I posted something. It's gone now. I have to do it again and again and again and again. You don't really understand how stressful it can be as a social media person to be constantly coming up with new content.

Marie:                               23:25                   Oh my gosh, I agree with you so much and I would never ever recommend a strategy or a platform or anything without having tried it myself and then knowing the organization and often. You know, sometimes Janet often I will work with an organization and at the end I'll say, I don't think that you're ready for social media because I'm aware that you just don't have the time to do this. Even though I've showed you all these time saving tricks. The willingness isn't there or just the passion isn't there and that comes through in what they're doing and it can be quite alarming for them to hear. I don't think you should be doing social media or I think you should just do this one little bit, but it's more important to me that they do it well. Then they just do it half heartedly or that it runs out of steam after two or three months.

Janet:                                24:12                   How about from an advocate standpoint, do you find that you really do need the the C-suite or some higher levels on board with the idea of social to make it really fly or if there's a really passionate marketing group, they can overcome the naysayers internally.

Speaker 3:                        24:29                   You do need that c suite buy in. I really feel that you do, but now that you mentioned a passionate marketing group, they're more powerful than the seat suite, so it really doesn't matter whether it's one or the other, but the main thing is that they. They're willing to do it and that they're committed to it and they can bring others along with them within the organization. So once you have or even just one person that has that little bit of leverage, that little bit of power, then we can get good traction.

Janet:                                24:56                   Now, the last year, really the last two years in the United States, social media has become a very uncomfortable place to be for a lot of folks and we've obviously seen a lot of divisions happen because the old adage of never discuss religion or politics has gone through the window and all we seem to be discussing is religion and politics. From a corporate standpoint, are you getting pushback with people saying, well, I was thinking about social, but now that I see all this happening, I think we'll just pass?

Marie:                               25:30                   Oh my goodness. Yes, absolutely. More so than ever for sure, and I wonder sometimes sometimes I like them to go back to social media content marketing rather than the social media. Going back to the writing, going back to communicating and what is the message that you want to communicate and maybe pulling back a little bit from the social media side, which can be perhaps promoting the content, doing a little less of that, but more about just driving people to your website because remember you have control over your website in the same way that you wouldn't have control if you're on Facebook or in Twitter, you're opening yourself up to a lot, so I would actually take it back to the website into creating great content when it comes to that rather than just abandoning any kind of digital communication.

Janet:                                26:19                   Well, I couldn't agree more, but we're. We're both singing from the same song page because we are both members of the external advisory board for the Mayo Clinic, Social Media Network and are big believers in social and also in the community that social can develop.

Marie:                               26:36                   Absolutely, and it's a wonderful network, Janet. It's a wonderful place. I've been doing this for almost 10 years now and I'm still learning. I still have questions and it's wonderful to know that you have a place of likeminded people, people who are in the trenches with you, who you can just run things past and you can just say, you know, should I, should I go that angle? What should I do? Should I tell my clients maybe not to be on social media without naming names obviously, but just that general, being able to speak to someone else who really gets it is incredible and it's a very friendly group. It's a such a helpful group. It's been incredible to me to be able to turn to that group over the last two years.

Janet:                                27:14                   I couldn't agree more. So here's a little sales pitch for the Mayo Clinic Social Media Network. You can find them at socialmedia.MayoClinic.Org, and please visit. You can learn a lot of things there. There's ongoing education, there's opportunities to connect with your peers. There appears of all levels and there's always somebody willing to both answer questions and answer questions with experience in your specific area, in the healthcare vertical. And now it isn't just hospitals. There are definitely people that are like myself, I guess I qualify as a vendor now, but there are other experts that are in the group as well as physician practices and other related healthcare industries, so don't think it is just about hospitals. It's a much broader than that.

Marie:                               28:05                   Because I'm not in it. I would not work with the hospitals that much, but I work with work with startups. I would work with the pharmaceutical industry so we all bring some new expertise to it. And the other thing about the network, Janet is our member joining and thinking, Oh, if I ever have a very simple question, I'd be almost afraid to ask it, but that's just so not true. People are so willing to share their expertise and to share what's worked for them. And that's incredible. We can read industry reports, we can read the Social Media Examiner is of this world and I do, but there's nothing that beats been able to say, does this actually work? Did it work for you? It doesn't seem to be working for me. What am I doing wrong? So that's incredible to be able to do that.

Janet:                                28:43                   And of course it's a network that is a log in network, so it's a safe place. It's a space where you can ask a question about, hey, is this a HIPPA violation or this patient said this, how should I respond? Uh, you gotta have a place where you can do that, that that's private, insecure and the respect in the group is, is very, very high,

Marie:                               29:04                   Very high and incredibly friendly and welcoming and more so. Now we've done a wonderful sales pitch. No more not on commission. We genuinely mean this.

Janet:                                29:13                   Absolutely. Well, I can't wait to meet you in person, Marie and again, we are both getting together at the annual meeting of the Mayo Clinic Social Media Network coming up November 14th and 15th and then their pre event called the residency, which is really bringing you up to speed on how social media is being used in healthcare. If you are new to healthcare, say for instance a lot of folks come from the news side into healthcare or maybe you've come to marketing and you haven't been exposed to that much social media, that one day intensive is really, really helpful. So I recommend that you look at all of those pieces and we'll have links in the show notes to both the Mayo Clinic event as well as how to find Marie, but in the short term you. What's your Twitter handle?

Marie:                               30:01                   @JBBC, what does that stand for? There's a whole story behind that. I would never do it now, but I just. The whole story behind it is how I got started in social media. Well, 14 years ago I was diagnosed with breast cancer and I started a blog and I got very involved with the whole patient advocacy side, but it broadened out, but the JBBC stood for my blog which was journeying beyond breast cancer, which got shortened to JBBC. I ended up creating a community around that. So I started with that and you know, a lot of people don't even ask why are you JBBC anymore? So I've just decided to just leave it. I'm just JBBC, it doesn't necessarily mean anything apart from the fact that it's, it's still very special and important to me that this journey started for me with wanting to communicate once you define the community. When I was extremely ill and I felt very isolated at the time. So my love for social media really goes back to those roots and that's why I keep up, put her hand.

Janet:                                30:57                   Oh well awesome. I cannot wait to meet you and to make our friendship happen in real life as we say.

Marie:                               31:05                   I'm so excited about that. There's nothing like a digital communication is wonderful. Meeting people online is wonderful, but you know what, there's nothing like meeting people face to face.

Janet:                                31:14                   Absolutely. Well, we'll see you there. Maria and I hope other people who are listening will join us and it is an annual event that moves around the country between the Rochester, Minnesota campus, the Jacksonville and the Arizona campus. So jump on board and come meet your fellow colleagues in healthcare, social media. This has been the Get Social Health podcast and I thank you all for listening today

Announcer:                      31:39                   And now. Here's our social media success tip.

Dan:                                   31:43                   Hi, I'm Dan Hinmon, President of Hive Strategies. More and more hospitals and clinics are considering starting a Facebook support group, and if you are, I have two important tips for you. A successful Facebook support group solves a problem both for the hospital or clinic and for the patient, so start by aligning your group with a key hospital marketing or business objective that will make sure you have the internal support that you need. And secondly, find out if your patients are even interested by interviewing five or 10 potential members of the group. If you find interest and you've aligned the community to your business strategies, then you're on the right foot to start a successful four Facebook support group

Announcer:                      32:31                   You've been listening to. They Get Social Health podcast. The show notes are [email protected] to join healthcare, social media journey. Follow at, Get Social Health on Twitter and start a conversation. Thanks for listening to the Get Social Health podcast, a production of the healthcare marketing network, and a proud member of the healthcare podcasters community.

Janet:                                32:54                  I'd like to take a moment to tell you a bit about the healthcare marketing network. We're a community of freelance healthcare writers. Our Organization can match your company or healthcare practice with clinically accurate, specialized or general healthcare and medical content from blogs to white papers to CME. The healthcare marketing network has the writers you need to reach your business audience or patients to find out more, visit healthcaremarketingnetwork.com, or contact me via social media or email at [email protected]. Thanks for listening to the Get Social Health.

 

How does the internet impact healthcare?

Susannah Fox, former CTO of the HHS and the Obama White House joins Janet Kennedy on the Get Social Health podcast to discuss research, social media, and online healthcare communities. Listen to the podcast or drop in at the time stamps below.

Interview Transcript:

Janet:                                00:00

Thank you for listening to the Get Social Health podcast, a production of the healthcare marketing network. The HMN is a community of freelance healthcare and medical writers ready to support your business or practice. You can find [email protected]. On the podcast today, I had the honor of speaking with Susannah Fox, one of healthcare's leaders in the field of data research and understanding the implications of how the Internet has changed our ability to communicate and connect. She is a fascinating person and I know you'll enjoy our conversation on Get Social Health.

Announcer:                      00:36                   Welcome to Get Social Health, a conversation about social media and how it's being used to help hospitals, social practices, healthcare practitioners and patients connect and engage via social media. Get Social Health brings you conversations with professionals actively working in the field and provides real-life examples of healthcare, social media in action. Here is your host, Janet Kennedy.

Janet:                                01:03                   Today on Get Social Health I have the honor of speaking to somebody that I may stumble a little bit when I ask questions because I'm a true fangirl. Susannah Fox is really a legend to those of us in the digital health and marketing world because she's the person that validates so much of the information that we use in marketing and communications in the healthcare space. Welcome to the Get Social Health podcast, Susannah.

Susannah:                        01:28                   Thank you. I'm thrilled to be here.

Janet:                                01:30                   Well, I want to give people an opportunity to learn a little more about you, but I will say you're one of the few guests that I could literally say and she needs no introduction, so let's lay some groundwork here. The reason I'm talking to Susannah, is that she's actually going to be one of the keynote speakers at the Mayo Clinic Social Media Network annual conference coming up November 14th and 15th at the main campus in Jacksonville, Florida, and so I'm honored to be able to talk to her today and I have so many questions. So first we're going to lay some groundwork and we're going to talk a little bit about Susannah's background leading up to where she is today. Now as I came into healthcare, Susannah Fox, this name was often mentioned regarding the actual data of healthcare and how people were interacting with social media and the Internet. Her work was one of my go-to places as I got up to speed on how social media and marketing and healthcare and the Internet all came together at that time. You were with the Robert Wood Johnson Foundation, but I'm sure you actually had a job before then. So. what is your real backstory?

Susannah:                        02:43                   Well, my backstory starts way back in the nineties when I like to say dinosaurs roamed the Internet and we were just starting to understand that the Internet was going to have a big impact on all sectors of society, but the nineties, a lot of people really focused on the business.com aspect and I was at that time I worked for a startup company. I helped start the website for US News and World Report magazine. I was building websites and then got pulled towards research and had the opportunity to help start the Pew Internet project, which is a part of the Pew Research Center here in Washington DC. What I loved about the Pew Charitable Trust charge to us, they said, we want data about the social impact of the Internet. A lot of people are looking at the business impact. We want to find out how is the internet affecting Americans lives in terms of their family's education, government and health, and healthcare.

Janet:                                03:47                   Well, I have to say that a very different conversation would've been held a couple of years ago and we can kind of touch base with some of the dramatic changes that have happened online since the 2016 election, but prior to then it really was a very happy and healthy place to be. People were using social to be social and new and fascinating things were happening in the healthcare space with people connecting. Is that what you found? Pre-2016?

Susannah:                        04:16                   Yeah and I still see it today, so I will confess to being like my dad, who his therapist once told him, you are in the rational optimist, you are irrationally optimistic about the world and I tend to share that trait in that I still see reasons for hope even now, especially in healthcare because of the Internet, the power to connect people with the information data and tools that they need to solve problems.

Speaker 1:                        04:47                   Absolutely, and if anything, I think it's health care that shows the greatest opportunity for using social media in a proactive way and when I hear people dis my favorite platform, which is Twitter, I'm like, you have no idea what amazing things are happening in Twitter, particularly in healthcare, so don't throw the baby out with the bath water. Let's figure out how to make this work.

Susannah:                        05:11                   I agree. Sometimes I describe Twitter while I described certain hashtags on Twitter as campfires that if you need it, you can go to a certain Hashtag like you would gather around the campfire and find other people like you exchange stories sort of strengthen your spirit for going back out into the dark. You know, it's not for everybody, but when you find a campfire that works for you, then it really is special. It really is helpful.

Janet:                                05:43                   I can't describe it better myself. That is such a wonderful analogy and I am already visualizing how I'm going to make a cool meme out of this. So you were working with Pew and you were part of a team that developed all of the fascinating insights. Things that we hadn't really realized before how teens were using social media, how young adults were very digitally savvy and they literally would go to the Internet to ask their healthcare questions. Whereas a generation before we always went to our parents.

Susannah:                        06:16                   That's right. Or if we went and books or we only relied on clinicians for advice. What we saw when we were doing our initial research, this is back in the year 2000, 2001. We were looking at how people were using the Internet to gather information. You know, this was really pre-iPhone. It was pre-Google. People were stitching together research and finding ways not only to find information but to find each other. And that was one of the early indicators to me that social media was going to be huge because people were finding a way to be social when it was just bulletin boards, you know, shout out to the old school people who number would a BBS is or Listservs, you know, when it was just email communities.

Susannah:                        07:14                   What we saw even back then is that people are really thirsty for connection and in healthcare. People were starting to trade information and data and I should hasten to say that back then and today when you ask people when you need a diagnosis or you're formulating a treatment plan, who do you turn to for advice? And it's still the case that the vast majority of American adults turn to a clinician, but they will get a second opinion from family and friends. And from what I like to call Dr. Google,

Janet:                                07:54                   Well, you're maybe the only person who likes to call it Dr. Google. So and that's a big pushback from clinicians is they, they really get frustrated when inaccurate information is brought to them. Or a very broad range of information is they feel like they're not being very efficient in having to really allay people's concerns about information they don't like in the first place. So you know, my response to that is then you need to be creating the information that you want your patients to be seeing. That we need clinicians to step up and be producing content at a much higher rate.

Susannah:                        08:31                   Yeah. You know, I have a lot of empathy for people who have not yet gathered around one of those campfires had described. I have empathy for people who were raised and trained in a world where we didn't have access to the resources of the Internet and so one of the reasons why I'm so passionate about research and playing this role of ambassador between the research world and the clinical world and other places, is that we need to convince people with data. We can tell stories, but we also need to have data to show this is the majority of American adults and it's reaching now into populations that a lot of clinicians might not expect. It's reaching into older adult populations. It's reaching into people who are living in lower income households. People with a high school education are now likely to have a smartphone. I'm more often than they did five or 10 years ago, certainly, and so you know, I have empathy for people who feel like the landscape is shifting under their feet.

Susannah:                        09:43                   Oh, I agree totally. Although I will say, and this is going to date me a little bit when I was pregnant with my one and only son, I had the opportunity to potentially be the first person to use the labor delivery something something or where basically it was all done in one room because back in those days it was, you know, you were here for a while and they rolled into the delivery room and so they were just inventing this alternative kind of space and it was the oldest physician in the practice who was over 70 who really was hoping to be the first person to use that room. So I will defend the mature generation and say it isn't just generational regarding whether they're willing to adapt to new things. Because I see, for instance, in the entrepreneurial world, the average entrepreneur is over the age of 40, so we kind of get in our heads that it's all the millennial's in the digital natives, but I see all kinds of people in a more mature segment trying to learn and catch up.

Susannah:                        10:43                   I totally agree. Thank you for saying that. And what I've also heard in my fieldwork and talking to people who are living with life-changing diagnosis and rare conditions, is that the specialists that they go to value when patients have done a lot of homework, they value when patients come and say, well, I'm part of a worldwide network of people with this condition and we've all pooled our data. Here's what we believe, you know, can we investigate this? And so, you know, as we think about the spectrum of who is open to the Internet's impact on health and healthcare, we absolutely can't just talk about age and generational differences. You know, we can talk about specialty differences. You know, how our pediatricians different, for example, from geriatricians. And you know, one thing that I love is I'm really interested in the quality improvement movement as well and when I go to those meetings there so often dominated by pediatricians and I find that so fascinating that pediatricians seem to be really open to the possibility of change in their industry. And it actually dovetails really well with their audience being the moms and dads who are searching online for information that's a team that surrounds a child that's really ready to use all the information available to help that stay healthy.

Janet:                                12:12                   Oh. And I love what's happening over in the American Academy of Pediatrics. They are embracing social media. You can become a tweety attrition and help them share stories. And when I interviewed the president of the AAP a few years ago, one of the things that was said is that had pediatricians been online and active in social media in numbers that many years ago when the whole discussion of vaccines and autism came up, if they had been able to end moss respond authoritatively in social media, it might not have turned into something. But unfortunately, by being more passive about it, they let other people take their voice and really change healthcare for pediatricians. And so I think that part of their response and being open-minded is we can't afford not to be because we can see the devastation that can happen when pupil spread incorrect information.

Susannah:                        13:09                   Yeah, I love that story and think that it is a story that could be told across multiple disciplines. There are going to be other moments when there is misinformation when there is misunderstanding and so it really makes sense for clinicians to be ready and to have, you know, their field marshals out there ready to go on social media.

Speaker 1:                        13:34                   Absolutely. Because the other thing with knowledge comes wisdom and comes confidence and indeed comes hope because if nobody's responding with information that's accurate and correct, then people worry. So if you are there with them, don't worry. Here's what happens. You know, if you can imagine when we had to healthcare providers come to the United States with a confirmed exposure to a bola and how literally the whole country was freaking out. That's a time when we needed healthcare people. And many of them did step up and say, you don't have to worry. Don't panic.

Susannah:                        14:13                   That's right.

Janet:                                14:14                   Well, I think that's absolutely fascinating work now. You also then worked for the US Department of Health and Human Services. So tell me what the transition was like and what kind of projects you worked on when you were a government employee.

Susannah:                        14:27                   I should say that when I left the Pew Research Center it was because I felt that I couldn't write another research paper about the internet and healthcare. I felt like I. I had some answers and I wanted to try and get in the trenches a little bit and try to change things based on all the observational work and data collection that I'd done. And so first I went to the Robert Wood Johnson Foundation to work because of their entrepreneur in residence. While I was there, I got a call from Brian Civic and Todd Park. Todd was the first CTO at the US Department of Health and Human Services. He was appointed by President Obama to create that office and then had moved up to become the CTO of the White House. And Brian took the spot as HHS CTO and they called and said, we think that you're the third CTO, we think that you should be the next one, and I, I have to tell you, I said, no, no, no, no, you don't understand.

Susannah:                        15:29                   I'm really enjoying my work here at the foundation. Then they started describing what the portfolio does. So the portfolio of the office of the chief technology officer to HHS oversees the open house data initiative. Well, I love that initiative. That's really what I believe is going to unlock well being for a lot of people and that is that data should flow to where it needs to be, whether we're talking about national data in the realm of public health, whether we're talking about improving it at the practice level or whether you're going to give access to an individual. So they caught my attention to that and then the rest of the portfolio is so much about empowering HHS employees, whether they work at NIH or CDC or FDA or Indian health services to try new things, to act like they are entrepreneurs. Well, I couldn't resist the opportunity because I really do believe that a lot of the spirit of the Internet, which some people associate with silicon valley, but I really think now is is everywhere.

Susannah:                        16:45                   This idea that we should be experimented with, new ways to deliver care. I think that shouldn't be limited to startup companies and it was amazing to serve at HHS and to talk with people about how to unlock data, how to unlock the information that the federal government holds to better serve the American people. Now I should pause and say the other part of the role is to serve the leadership, to serve the secretary and the leadership at each of the operating divisions. As sort of a lookout and I sort of think about the role of the chief technology officer as someone who's up in the crow's nest of a ship, scanning the horizon for opportunities and for hazards in the technology landscape. And so that, for example, an opportunity that I saw in the landscape and then I brought to the leadership was this new movement towards not only innovation in software and data but in hardware like medical devices and assistive devices for people living with a disability.

Janet:                                17:57                   Oh, okay. Fascinating. Well, did you see the cybersecurity issues on the horizon?

Susannah:                        18:03                   So, yes. And cybersecurity was something that we discussed quite a bit and that was particularly in terms of how to handle, for example, data security around the blue button initiative. The Centers for Medicare Medicaid services created a way for Medicare beneficiaries to be able to download a simple text file of their claims data and the veteran's administration had done it first. The VA had created the blue button download for veterans. It had been really popular and so cms rolled out a version for Medicare beneficiaries and what my office did was start to work on the creation of an API so that Medicare beneficiaries could not only download the data but directed to an app of their choice. But what's very, very important here is that you need to make sure that it really is that Medicare beneficiary who's downloading the data that, that no one else is getting access to it because it is sensitive data. So that's an example of something that we worked on.

Janet:                                19:18                   Very, very cool. Now you're not necessarily a computer scientist by training, however.

Susannah:                        19:24                   No, I studied anthropology and. Okay.

Janet:                                19:29                   Tell me the correlation between.

Susannah:                        19:32                   Yeah, so when I was in school, so, so first I should say that I'm the daughter of an engineer and a journalist. My Dad was an engineer and my sister's an engineer. My brother's an engineer. And so I was an early Internet user at home because of my dad. He was the kind of person who would, who would read like C++ books at night for fun. And so I was not as manager to technology, but I studied anthropology because I saw it as a really interesting systematic way to understand society, to understand the culture. I use the skills of an anthropologist in my work as a researcher because most of the Pew Research Center's work is based on national surveys. But what I saw is that there was no way for us sitting in an office building in Washington dc we couldn't possibly understand and therefore ask good questions of Americans who are using the Internet for health and healthcare if we didn't get out there and listen if we didn't get out there and do fieldwork in the way that an anthropologist. And so when I was developing questionnaires, I would start by doing online surveys and online listening tours of people who were gathering in communities. And it turned out to be kind of a secret weapon. People would say. How were you able to predict the rise of mobile so early? How were you as the Pew Research Center at able to predict the rise of the importance of health data so early? And it was because of the field work that we did, talking to people, especially as I mentioned, with rare and life-changing diagnoses.

Janet:                                21:22                   And how did you do that exactly?

Susannah:                        21:25                   The first time we did this kind of field work? I was very, very fortunate to have a mentor in Tom and Tom was someone who had graduated from Yale Medical School. But decided that the most important thing for him to do was to find ways to empower people with health information. And by the way, this was in the 19 seventies, so selfies in seventies. Yeah. So in the sixties and seventies, he, for example, was the first medical editor of the whole earth catalog. And as soon as the internet came along, he understood that it was finally the platform that would allow people to connect with information. He really believed that people should get health education in the same way that we get drivers education. And so he became a, an advisor to us at the Pew Internet Project and he became a mentor to me personally and he knew all kinds of wonderful people who ran online communities. For example, John Lester and Dan Hoke Ram, the first online community for people with neurological issues, seizure disorder, traumatic brain injury. And so for example, one of our first pieces of fieldwork was in that community in doing a survey, asking people to tell us stories about what they learned by being part of that community.

Janet:                                22:54                   That is such a good example of go to the source and that I feel like sometimes our information is just rehashed versions of rehashed versions of older data and gee, old and the Internet feels like, you know, if you're more than three years old, your data, that could be a problem.

Susannah:                        23:13                   Absolutely, and what I also have found is that if you want to see the future, you should pay attention to what hackers are doing, what artists are doing, people who really push the edges of whatever field they're in and in healthcare. That is people living with rare and life-changing diagnoses. People who are living with ALS, for example. That was the motivation behind patients like me, which was a very early platform for people to collect and their own data about how they're reacting. For example, two different treatments and medications so that if you can track the progression of your disease, you might be able to see the future a little bit faster and crucially do need that data to the common meaning. It might benefit you, but it will certainly benefit the people who are behind you on the same path. That's again, something that I see as very, very hopeful that the internet can often unlock the ability for altruistic action and I really believed that it is part of human nature to want to help other people, the platforms where I like to hang out, those where people are helping each other.

Janet:                                24:38                   That's definitely one of the things I felt when I came into the healthcare community is that everyone was so willing to share information, to answer questions and to be helpful and I felt like it was a very nonjudgmental space. Now we have newer challenges as more and more people are joining social without necessarily having appropriate social skills, but that's something that as individuals we can aspire to improve.

Susannah:                        25:08                   Absolutely, and there are differences between open platforms where anyone can join and closed platforms where there's a little bit more moderation. There's a gate, if not a wall...

Janet:                                25:21                   and basic guidelines. If you come in here, this is going to be a place of good behavior.

Susannah:                        25:26                   Exactly. As opposed to the wild, wild west, which just now Facebook and Twitter and the other platforms are having to figure out retroactively how do you set rules for an environment that didn't have very many rules? So let me ask about where you are right now. You left the HHS position in January of 17. So what have you been up to? What I decided to do is get back into research because when I finished my service, yes, I looked around and saw that the Pew Research Center had decided not to continue my portfolio of health and technology research and really nobody had picked up that baton.

Janet:                                26:05                   I want to cry now.

Susannah:                        26:08                   Well in some ways our initial findings of how many people look online for health information became old hat. It became something that everyone assumed that everyone knows. And so what I am continually interested in is again, pushing the edges. So where are the new edges? It was edgy back in the year, 2000 to ask people about whether they are looking for a diagnosis online. Now the edges are more in terms of what I call peer to peer healthcare and we hadn't had a fresh measure of that since a survey that I did in 2012 and so I was approached by Hope Lab foundation in San Francisco to create a research project and national research project that asked teens and young adults about how they use social media and other digital health resources. They have a special interest not only in this age group, 40 to 22-year-olds, but they and a partner that came onto the project, the wellbeing trust have a special interest in emotional wellbeing and so in addition to asking traditional questions about how people use the internet to gather, share and create health information, we also ask questions about whether the respondents were experiencing depressive symptoms and so it's through that lens that we were able to do some really interesting analysis about emotional wellbeing.

Janet:                                27:41                   Well, since you're talking to this age group, obviously the topic of online and cyberbullying is really big. Now we know that kids are bullies and have been bullied since kids were kids. So my question is, are you finding comparing offline bullying to online bullying, is it worse?

Susannah:                        28:00                   So we didn't go after the bullying question straight on. What we were interested to find out is whether social media is a platform that makes teens and young adults feel better about themselves or feels worse about themselves, for example. And bullying is one aspect of that. We were also interested in hearing from them directly. So in addition to asking traditional survey questions, we made sure that the survey included five essay questions. This was an online survey. So that's the magic doing an online survey. It allows for an open-end set of questions. And so we ask people, tell us the story about when you've gone online and use social media, did it make you feel bad or did it make you feel good? Tell us the story about those things. And cyberbullying was mentioned, but not as often as other aspects of social media.

Susannah:                        28:59                   The dreaded FOMO, fear of missing out was part of it. People also mentioned that seemed like everybody else was doing better in life, but you know, it was really interesting is that there were more stories about how teens and young adults are using social media to boost their spirits, to find inspiration. You know, there were a lot of stories about people who carry their social media feed to make sure that they really see positive images. They talk about how if I'm feeling low while I go on Instagram and I look at funny cat memes and that cheers me up, or another person wrote about how they follow accounts that share inspirational biblical quotes and that really helps them to feel better. And so I think what's emerging is more of an understanding that social media can be used as a tool and that we have an opportunity to help educate people about how to use it as a tool for positive outcomes. And that that's actually something I'm really excited for. All kinds of people to explore. Whether it's in healthcare, whether it's educators, whether it's policymakers, whether it's technology companies. Looking at this data and seeing that this is already happening. How can we boost the signal on using social media for good?

Janet:                                30:27                   All right, well I. I hate to be a devil's advocate, but I'm going to do it anyway. If everybody is filtering only for the good, now in some cases the good is only what I want to hear, but what you end up is that whole silo or you're in a vacuum and you're just reinforcing. Now I get what I get what you're saying about young adults and wanting to only read positive things, but that means they're reading nothing about politics and if we want to engage them in society, they've got to be getting some information about what's going on in the world around them.

Susannah:                        31:04                   Absolutely. So these questions pertain to when you're feeling low, what do you do so that it wasn't necessarily about how do you gather information about current events? Because actually, the Pew Research Center is continuing to do research about that. They have some new data about how people are using social media to gather information about current events and as you might expect, it's a pretty high level, especially among young adults. So it's not a question of turning away from current events or politics, it's a question of when you yourself are feeling sad, how do you use social media and empowering people to to frankly put down their phone if they know that social media makes them feel bad, then telling people it's okay. You don't have to look at Facebook today. You can put down your phone if it's making you feel sad.

Janet:                                32:06                   See, that was my next question. You already answered it, which is sometimes social media is not the solution and going out for a walk or go and have a coffee with friends. It really is.

Susannah:                        32:18                   Absolutely. And people told stories about that as well. And in our survey that they say, when I'm feeling low, I put down my phone, I go offline, I call somebody and say, you know, can we get together? One aspect which I thought you might be interested in is people who are potentially in a minority group are isolated, are likely to go online and look for other people like them. And I'm thinking here of teens and young adults who are in the LGBTQ population, they were more likely, um, unfortunately, to report that they were experiencing depressive symptoms and more likely to use social media to reach out to other people. We had a question where we asked, have you read, listened to or watched other people share about their health experiences online and LGBTQ youth were more likely than those who you know as, as they say, cisgender and street youth to go online and look for people who were telling their stories online.

Susannah:                        33:29                   And that can be is really important because so often in healthcare social media circles, we talk about the value of sharing stories and here's some data that shows how important it is. If there is an audience out there, what's also important is you never know who's going to watch that story, who's going to watch that video, who's gonna read that blog post and it's really going to make a difference and they might not leave a comment you might not know that you made. And that's why I was so passionate to do this research and what law. Let me just tell you, it's 61 percent of all teens and young adults in the United States say they've read, listened to or watched other people share about their health experiences online, positive or negative, positive or negative.

Janet:                                34:22                   Oh Wow. That's huge. That's a huge number. And particularly when we talk about how hard or younger demographics are to reach, put the information out there, make it available. They'll find it obviously.

Susannah:                        34:35                   Well that's what we're finding out is especially video.

Speaker 1:                        34:38                   Oh, that's interesting. So what about the level of anonymity that some people in the communities, the communities that are concerned about exposure? Are they finding that it's literally going on camera and being seen is what helps?

Susannah:                        34:54                   So we didn't ask the question. This survey specifically about data security or anonymity. What my friends who study privacy and security tell me is that younger people are quite savvy about cloaking their identity if they want to. They are able to create throwaway emails to register for a site under a pseudonym, for example, and it's actually older adults, baby boomers who are less likely to be as savvy about cloaking their identity online. So that's one aspect of that I think is an opportunity across the board for education. If you want to remain anonymous, what are the ways that you can do that?

Janet:                                35:42                   And what is going to be the end result of all this information that you've been gathering through Hope Lab?

Susannah:                        35:48                   We published a report at the end of July that goes into detail about how teens and young adults use digital health tools and then we had a whole chapter specifically about looking at it through the lens of the teens and young adults who are living with depressive symptoms versus those who are not. And so that report is available for free on the Hope Lab website.

Janet:                                36:14                   Great. Well to those folks listening, I will have a link in the show notes so that you can get right to that and take a look at this. Well, that's fascinating. Now you've taken 15 years of research, in particular, your most recent research and you're going to be speaking at the Mayo Clinic, social media networks annual meeting, which as a reminder is going to be November 14 and 15 of 2018 in Jacksonville, Florida. At the Mayo campus and your topic is to share, connect, engage social media as a platform for hope. Now we've talked about hope and I think you and I are singing to the choir here that we definitely believe that social media has many, many positive things going for it. Uh, and that we shouldn't be turning our backs on it just because we hear things that we don't necessarily want to hear. That said, what is your topic going to address?

Susannah:                        37:06                   What I hope to do with this talk is give the choir some data. So often when I'm talking to people, whether it's an audience, as you say, of preaching to the choir or it's an audience of skeptics. I like to come with data that shows that the facts are on the ground. This is how many people are using these tools in various demographic groups across, you know, income and education groups. And so if you want to reach people, then you need to reach people through social media. What I'm also going to do is tell some of the stories that I've collected in my fieldwork of examples of how people have been able to connect to each other to find the clinical trial that they needed to find the doctor for their child or for their loved one, and to say to this audience, use this data to convince your colleagues to convince your funders, whoever it is that controls the information silos in your organization or who controls the budget.

Susannah:                        38:22                   Make sure that they know how many people, for example, are using their phones to look for information and use that data to help them to see how important it is to make every healthcare website mobile first. Not just mobile friendly, and that once you make your information find-able and shareable, that's how we're really going to help unlock well-being because you'll have agents you don't even know about who is out there ready to collect information and share it in their neighborhoods. Whether it's a virtual neighborhood or a real neighborhood, an offline neighborhood. There are so many people who want to connect to science who want to connect to fact-based information and who then want to be able to share it. So how do we empower those people to be part of healthcare?

Janet:                                39:24                   You know, one of the statistics from Pew that I often quoted my teaching is that a 10 percent of mobile users, their phone is their computer is their only access to the internet, so it's not like they're glancing here and then they're going to go home and open up the laptop. That's their only source of access to the Internet.

Susannah:                        39:46                   That is true and, and something that's, that's important to know is that that's often the lower socioeconomic status folks who are mobile only and so sometimes I'll speak to, for example, a group of hospital CEOs and there'll be from a whole range of communities, some serve a safety net population, some sort of a higher income population. And what I always tell them is, is that by making sure your information is mobile friendly and even better mobile first you are serving all populations. You're serving that mobile-only safety net population as well as the higher income folks who are also using their smartphones to gather health.

Janet:                                40:34                   Fascinating. Now, this project ended in July. Does that mean you're now getting new clients for your, for your practice?

Susannah:                        40:42                   Yeah. I got permission from the Pew Research Center to take the portfolio that I created there and republish it as an Ebook, so I'm working on that project and we'll be writing new introductions to that material because what I find is that some of the material is evergreen. You know, we, we need to update some of the numbers, but in looking back at what I published in 2012 and 2013, it really is salient today's population. So I'm working on that and yeah, I'm actually looking for partners to work on a survey of the adult population in the US since the Hope Lab and well-being trust survey focused on teens and young adults. I now really to do a survey that renews our data about older adults.

Janet:                                41:39                   Absolutely. I mean, my eyes were opened this morning listening to an NPR story about medical cannabis clinics, getting buses and going to senior centers and picking people up and bringing them over to go shopping or learn about cannabis and who'd have thought?

Susannah:                        41:57                   Yeah, and we're really just at the beginning, hopefully of a whole range of possibilities and innovations for older adults. You know, it's a passion of mine because I see such an opportunity. That's one of those things, you know, being up in the crow's nest, we're looking at across the landscape, it's both an iceberg and potential paradise island of opportunity. We're going to have a population of older adults that I'm not sure that we're really ready for in terms of our caregiver population and so wow, we really need to think about how to care for older adults and there's great innovation to be had.

Janet:                                42:39                   Absolutely. Well, Susannah, I'm thrilled that you joined the podcast today and I really look forward to meeting you in person at the Mayo Clinic, social media networks annual conference coming up November 14th and 15th in Jacksonville, Florida. It's going to be easy to find when you Google online, but socialmedia.MayoClinic.Org. We'll get you to the right place and I so, so appreciate your time today. Fascinating. As always, I have pages of notes and I'm definitely going to be looking into some of the things that you referenced today, particularly Hope Lab and the well-being trust. Thank you so much for joining me.

Susannah:                        43:17                   Thank you.

Announcer:                      43:19                   And now here's a social media success tip.

Farris Timimi:                   43:22                   Hi, I'm Ferris Timimi with the Get Social Health podcast. My social media tip would be for healthcare providers. Consider social media strategy's not as a broadcast medium, but rather as a listening strategy to truly understand the lived experience of a patient as they progress through their disease to recovery. There can be no better avenue for gathering real-world data.

Announcer:                      43:46                   You've been listening to, they Get Social Health podcast. The show notes are located at getsocialhealth.com to join our healthcare social media journey, follow at, Get Social Health on Twitter and start a conversation.

Janet:                                44:03                   Thanks for listening to the Get Social Health podcast. A production of the healthcare marketing network and a proud member of the healthcare podcasters community. I'd like to do to take a moment to tell you a bit about the healthcare marketing network. We're a community of freelance healthcare writers. Our organization can match your company or healthcare practice with clinically accurate, specialized or general healthcare and medical content from blogs to white papers. To see the healthcare marketing network has the writers you need to reach your business audience or patients. To find out more, visit healthcare marketing network.com or contact me via social media or email me at [email protected]. Thanks for listening to the Get Social Health podcast.

Reach out to Susannah Fox:  https://www.linkedin.com/in/susannah-fox-b27450/