Get Social Health

The Digital Medicine Society

As the host of both Get Social Health and “People Always, Patients Sometimes” (a podcast for Spencer Health Solutions), I have even more opportunity to talk with some exceptional individuals and organizations. As such I get jealous of some of the guests on the other podcasts, which seems odd because I’m doing the interviews for each. Can I be jealous of myself?

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.


Lori Hall Health Literacy

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


Dave DeBronkart ePatient Dave Part 1

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 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:

Twitter: @ePatientDave

Lilly Stairs – Patient Advocate

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:

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 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 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 to join our healthcare social media journey. Follow at, Get Social Health on Twitter and start a conversation.

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