Podcast appearances and mentions of Susannah Fox

Empowering patients with access to their health data and information is crucial for better health outcomes.  In this episode, Susannah Fox, author of "Rebel Health" and technology strategist, discusses the importance of patient-led healthcare revolutions, the democratization of health information, and the need for patients to own their data. She also highlights the importance of improving collaboration between dental and medical care, empowering patients with credible information, and recognizing the seeker, networker, solver, and champion archetypes as essential roles in navigating complex healthcare systems. Tune in and learn how patients, clinicians, and innovators can work together to create a more equitable and effective healthcare landscape! Watch the entire episode on YouTube and get more details at Think Oral Health. Resources: Connect with and follow Susannah Fox on LinkedIn and her website. Buy Susannah Fox's book, Rebel Health, here. Watch the entire episode on YouTube and get more details at Think Oral Health. Mariya Filipova - https://filipova.health/ Systemic Health Investor - https://www.4100dx.com/ Care Convergence Thought Leader: Dental Economics Forbes Technology Council Member Jonathan Levine - www.drjonathanlevine.com Founder - JBL New York City www.jblnyc.com Founder - GLO Science LLC www.gloscience.com Co-Founder - GLO GOOD Foundation www.glogoodfoundation.org

Susannah Fox is a highly accomplished health strategist and technologist. . Her book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care, was recently published by MIT ...

A child of Holocaust survivors balances pathological optimism with apocalyptic thinking while seeking meaningful ways to channel advocacy in turbulent times. Summary In this deeply personal episode, a child of Holocaust survivors reflects on navigating today's global chaos while maintaining hope in healthcare. As a seasoned healthcare advocate, they share insights on: Leveraging privilege for positive change Finding balance between optimism and realism Adapting communication strategies for greater impact The importance of self-care and community support Key highlights: Moving from long-form monthly interviews to shorter, more frequent content The role of music as a healing force Following Helene Epstein's "Patient No More" insights Special music feature: "The Weight" by The Band with Ringo Starr and Robbie Robertson

Successfully sharing & acting on research findings depends on active partnerships with the implementers – patients, caregivers, & their clinician partners. Summary Claude AI consulted to create this summary The 2024 Academy Health Dissemination & Implementation (D&I) Science Conference revealed a significant gap between researchers and implementers (patients, caregivers, and their clinician partners). While D&I science studies how to share and apply research findings effectively, the conference highlighted that implementers—the very people meant to use these findings—were largely absent. Through interviews with attendees, key barriers emerged: high conference costs, lack of deliberate outreach, and content primarily designed for researchers. A compelling example from Ghana demonstrated successful implementation through radio drama and community health workers, suggesting that effective D&I requires meeting people where they are, both literally and figuratively. Click here to view the printable newsletter with images. It is more readable than the transcript, which can also be found below. Contents Table of Contents Toggle EpisodeProemShare and Use: Dissemination and Implementation2024 Academy Health D&I ConferenceAccording to Scientists, What is D&I?Setup and IntroductionsNGOs using Implementation ScienceNothing about us without usNGOs implement every dayUnderstanding the caregiver's experienceResearch questions from implementersAlign the languageFacilitating implementationWhat is Dissemination and Implementation Science?Implementers at the conferenceMore intentional invitationsPartnering with PharmaPaying for implementers to attendExperts don't have all the answersCost and timeRadical dissemination by radioTen + ten + thirtyReflectionRelated episodes from Health Hats Please comment and ask questions: at the comment section at the bottom of the show notes on LinkedIn  via email YouTube channel  DM on Instagram, Twitter, TikTok to @healthhats Production Team Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk  Leon van Leeuwen: article-grade transcript editing  Oscar van Leeuwen: video editing Julia Higgins: Digital marketing therapy Steve Heatherington: Help Desk and podcast production counseling Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection, including Moe's Blues for Proem and Reflection and Bill Evan's Time Remembered for on-mic clips. Podcast episodes on YouTube from Audio Podcast   Inspired by and Grateful to Anonymous, Bernard Appiah, Bryan Ford, Catherine Hoyt, Nadia Sam-Agudu, Tatiana Nickelson, Greg Martin, Kristin Carman, Aaron Carroll, Susannah Fox, Eric Kettering, Rodney Elliott, Lisa Stewart, Ellen Schultz, Kathleen Noonan Links and references The Communication Initiative Network Bernard Appiah Bernard Appiah's publications  Fascinating!! Nadia Sam-Agudu recent publication. Check this out. St. Louis Sickle Cell Association University of Colorado Accord Center. See Infographic here. Communication and Dissemination Strategies To Facilitate the Use of Health and Health Care Evidence Dissemination and Implementation Science to Advance Health Equity: An Imperative for Systemic Change Managing Clinical Knowledge for Health Care Improvement Embedding implementation science in the research pipeline A Systematic Review of Patient Engagement and Its Organizational Impact The Application and Evolution of the Practical, Robust Implementation and Sustainability Model (PRISM): History and Innovations Engagement in Research: PCORI's Foundational Expectations for Partnerships | PCORI Toolkit resources | Consumer Engagement | VCCC Alliance Building the table together: Lessons on authentic community engagement from INSPIRE Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care – Susan...

Before getting into this new podcast, have you checked out the recent newsletter editions of Ground Truths?—how are gut microbiome drives sugar cravings—the influence of sleep on brain waste clearance and aging—the new findings of microplastics in the brain—the surprise finding about doctors and A.I.In this podcast with Dr. Emily Silverman, an internist and founder of The Nocturnists, an award winning podcast and live show, we discuss what inspired her in medicine, what led to her disillusionment, the essentiality of storytelling, of recognizing uncertainty, the limits of A.I., and promoting humanity in medicine. The audio is available on iTunes and Spotify. The full video is linked here, at the top, and also can be found on YouTube.“Storytelling is medicine's currency. Storytelling is not just an act of self-healing; it may actually create better physicians.”—Emily SilvermanTranscript with links to audio and relevant publications, websitesEric Topol (00:07):Well, hello. This is Eric Topol with Ground Truths, and with me, I am delighted to welcome Dr. Emily Silverman, who is Assistant Volunteer Professor of Medicine at UCSF, an old training grounds for me. And we're going to talk about some of the experience she's had there and she is the Founder of the remarkably recognized podcast, The Nocturnists. It's more than a podcast folks. We'll talk about that too. So Emily, welcome.Emily Silverman (00:40):Thank you for having me.Inspiration by Kate McKinnonEric Topol (00:42):Yeah. Well, I thought I would go back to perhaps when we first synapsed, and it goes back to a piece you wrote in JAMA about going to the Saturday Night Live (SNL) with Kate McKinnon. And it was one of my favorite columns, of course, it brought us together kind of simpatico because you were telling a story that was very personal, and a surprise factor added to it. We'll link to it. But it said, ‘Sometime in 2016, I fell in love with SNL comedian Kate McKinnon.' You wrote, ‘It was something about her slow-mo swagger; her unilateral dimple, flickering in and out of existence; the way she drinks up her characters and sweats them from her pores.' I mean, you're an incredible writer, no less podcast interviewer, organizer, doctor. And you talked about my sterile clinical life, which was kind of maybe a warning of things to come and about the fact that there's two very different career paths, comedy and medicine. One could argue they are in essence the same. So maybe you could tell us about that experience and about Kate McKinnon who, I mean, she's amazing.Emily Silverman (02:09):You're making me blush. Thank you for the kind words about the piece and about the writing, and I'm happy to give you a bit of background on that piece and where it came from. So I was in my internal medicine residency at UCSF and about halfway through residency really found myself hitting a wall. And that is actually what gave birth to The Nocturnists, which is the medical storytelling program that I run. But I think another symptom of my hitting that wall, so to speak, and we can talk more about what exactly that is and what that means, was me really looking outside of medicine and also outside of my typical day-to-day routine to try to find things that were a part of me that I had lost or I had lost touch with those aspects of myself. And one aspect of myself that I felt like I had lost touch to was my humorous side, my sense of humor, my silly side even you could say.Emily Silverman (03:17):And throughout my life I have this pattern where when I'm trying to get back in touch with a side of myself, I usually find somebody who represents that and sort of study it, I guess you could say. So in this case, for whatever reason that landed on Kate McKinnon, I just loved the surrealism of her comedy. I loved how absurd she is and loved her personality and so many things. Everything that you just read and really found her and her comedy as an escape, as a way to escape the seriousness of what I was doing on a day-to-day basis in the hospital and reconnect with those humorous sides of myself. So that's the understory. And then the story of the article is, I happened to be traveling to New York for a different reason and found myself standing in line outside of 30 Rock, hoping to get into Saturday Night Live. And there was basically a zero chance that we were going to get in. And part of the reason why is the musical guest that week was a K-pop band called BTS, which is one of the most famous bands in the world. And there were BTS fans like camped out in three circles around 30 Rock. So that week in particular, it was especially difficult to get in. There was just too many people in line. And we were at the very end of the line.Eric Topol (04:43):And it was in the pouring rain, too.Emily Silverman (04:45):And it was pouring rain. And my husband, God bless him, was there with me and he was like, what are we doing? And I was like, I don't know. I just have a feeling that we should stay in line, just go with it. So we did stay in line and then in the morning we got a number, and the way it works is you get your number and then that evening you show up with your number and our number was some crazy number that we weren't going to get in. But then that evening when we went back with our number to wait in line again to get in, what ended up happening is a young woman in the NBC gift shop, she passed out in the middle of the gift shop and I was right there. And so, I went over to her and was asking her questions and trying to help her out.Emily Silverman (05:27):And fortunately, she was fine. I think she just was dehydrated or something, and the security guards were so appreciative. And the next thing I knew, they were sweeping me backstage and up a staircase and in an elevator and they said, thank you so much for your service, welcome to Saturday Night Live. So it became this interesting moment where the very thing that I had been escaping from like medicine and serving and helping people ended up being the thing that gave me access, back to that side of myself, the humorous side. So it was just felt kind of cosmic, one of those moments, like those butterfly wing flapping moments that I decided to write about it and JAMA was kindly willing to publish it.Eric Topol (06:15):Well, it drew me to you and recognize you as quite an extraordinary talent. I don't know if you get recognized enough for the writing because it's quite extraordinary, as we'll talk about in some of your other pieces in the New York Times and in other JAMA journals and on and on. But one thing I just would note is that I resort to comedy a lot to deal with hard times, like the dark times we're in right now, so instead of watching the news, I watch Jimmy Kimmel's monologue or Colbert's monologue or the Comedy Show, anything to relieve some of the darkness that we're dealing with right at the moment. And we're going to get back to comedy because now I want to go back, that was in 2019 when you wrote that, but it was in 2016 when you formed The Nocturnists. Now, before you get to that critical path in your career of this new podcast and how it blossomed, how it grew is just beyond belief. But maybe you could tell us about your residency, what was going on while you were a medical resident at UCSF, because I can identify with that. Well, like any medical residency, it's pretty grueling experience and what that was like for you.Medical ResidencyEmily Silverman (07:45):There were so many wonderful positive aspects of residency and there were so many challenges and difficult aspects of residency. It's all mixed up into this sticky, complicated web of what residency was. On the positive side, some of the most amazing clinicians I've ever met are at UCSF and whether that was seasoned attendings or chief residents who they just seemed to have so many skills, the clinical, the research, the teaching, just amazing, amazing high caliber people to learn from. And of course, the patient population. And at UCSF, we rotate at three different hospitals, the UCSF hospital, the SF General Hospital, which is the public county hospital and the VA hospital. So having the opportunity to see these different patient populations was just such a rich clinical and storytelling opportunity. So there was a lot there that was good, but I really struggled with a few things.Emily Silverman (08:48):So one was the fact that I spent so much of my sitting in front of a computer, and that was not something that I expected when I went into medicine when I was young. And I started to learn more about that and how that happened and when that changed. And then it wasn't just the computer, it was the computer and other types of paperwork or bureaucratic hurdles or administrative creep and just all the different ways that the day-to-day work of physicians was being overtaken by nonclinical work. And that doesn't just mean thinking about our patients, but that also means going to the bedside, sitting with our patients, getting to know them, getting to know their families. And so, I started to think a lot about clinical medicine and what it really means to practice and how that's different from how it was 10, 20, 40 years ago.Emily Silverman (09:43):And then the other part of it that I was really struggling with was aspects of medical culture. The fact that we were working 80 hour weeks, I was working 28 hour shifts every fourth night, every other month. And the toll that took on my body, and I developed some health issues as a result of that and just felt in a way, here I am a doctor in the business of protecting and preserving health and my own health is kind of being run into the ground. And that didn't make sense to me. And so, I started asking questions about that. So there was a lot there. And at first I thought, maybe this is a me thing or maybe this is a California thing. And eventually I realized this was a national thing and I started to notice headlines, op-eds, articles, even pre-Covid about the epidemic of clinician burnout in this country.Emily Silverman (10:40):And there are so many different facets to that. There's the moral injury aspect of it, there's the working conditions and understaffing aspect of it. I learned about how physicians were starting to think about unionizing, which was something that had not really been in the physician, I think consciousness 20, 40 years ago. So just started learning a lot about how medicine had evolved and was continuing to evolve and felt myself wanting to create a space where people could come together and tell stories about what that was like and what their experience was. And that was the birth of The Nocturnists. But I guess that wasn't really your question. Your question was about residency.Birth of The NocturnistsEric Topol (11:20):That's a good answer actually. It kind of gives the background, lays the foundation of how you took a fork in the road here, which we're going to get into now. We're going to link to The Nocturnists website of course, but you have an intro there about, ‘shatter the myth of the “physician God” reveal the truth: that healthcare workers are human, just like everyone else, and that our humanity is our strength, not our weakness.' And that's a very deep and important point that you make to get people interested in The Nocturnists. But now you finished your residency, you're now on the faculty, assistant professor at UCSF, and then you have this gathering that you hadn't already named it the Nocturnists yet had you?Emily Silverman (12:15):I named it in residency.Eric Topol (12:17):Oh, okay in residency. So this was even before you had finished, you started the podcast before you finished?Emily Silverman (12:25):Correct. Before we were a podcast, we were a live show. So the very first live show was in 2016, so I consider that the birth year of the program. And then I graduated residency in 2017, so I started it about halfway through residency.Eric Topol (12:39):Got it. So tell us about that first live show. I mean, that's pretty amazing. Yeah.Emily Silverman (12:46):Yeah. I went to a live taping of The Moth in San Francisco, which some of your listeners may know. The Moth is a live storytelling show in the US, it's often on the radio on NPR. You may have heard it. It's a very ancient way of telling stories. It's more like monologues, people standing up on stage and just spontaneously telling a story the way you would around a campfire or something like that. It's not hyper scripted or anything like that. So I came out of that event feeling really inspired, and I had always loved live performance and live theater. I grew up going to the theater and ended up deciding that I would try that with my community, with the clinicians in my community. So the very first show that we did was in 2016, it was about 40 people in this living room of this Victorian mansion in San Francisco.Emily Silverman (13:42):It was a co-op where different people lived. In the living space, they occasionally rented out for meetings and presentations and gatherings, and it was like $90. So I rented that out and people came and residents, physician residents told stories, but a couple of faculty came and told stories as well. And I think that was a really nice way to set the stage that this wasn't just a med student thing or a resident thing, this was for everybody. And there was definitely an electricity in the air at the show. I think a lot of people were experiencing the same thing I was experiencing, which was having questions about the medical system, having questions about medical culture, trying to figure out how they fit into all of that, and in my case, missing my creative side, missing my humorous side. And so, I think that's the reason people came and showed up was that it wasn't just a night out of entertainment and coming was really more out of a hunger to reconnect with some aspect of ourselves that maybe gets lost as we go through our training. So that was the first show, and people kept asking, when are you going to do another one? When are you going to do another one? The rest is history. We have done many shows since then. So that was the beginning.Eric Topol (14:58):Well, you've been to many cities for live shows, you sold out hundreds and hundreds of seats, and it's a big thing now. I mean, it's been widely recognized by all sorts of awards, and the podcast and the shows. It's quite incredible. So a derivative of The Moth to medicine, is it always medical people telling stories? Does it also include patients and non-medical people?Emily Silverman (15:28):So we're nine years in, and for the first several years, this question came up a lot. What about the patient voice? What about the patient perspective? And the way that I would respond to that question was two ways. First, I would say the line between doctor and patient isn't as bright as you would think. Doctors are also patients. We also have bodies. We also have our own medical and psychiatric conditions and our own doctors and providers who take care of us. So we're all human, we're all patients. That said, I recognize that the doctor, the clinician has its own unique place in society and its own unique perspective. And that's really what I was trying to focus on. I think when you're making art or when you're making a community, people ask a lot about audience. And for me, for those first several years, I was thinking of The Nocturnists as a love letter by healthcare to healthcare. It was something that I was making for and with my community. And in recent months and years, I have been wondering about, okay, what would a new project look like that pulls in the patient voice a bit more? Because we did the clinician thing for several years, and I think there's been a lot of wonderful stories and material that's come out of that. But I'm always itching for the next thing. And it was actually an interview on the podcast I just did with this wonderful person, Susannah Fox.Eric Topol (17:04):Oh yeah, I know Susannah. Sure.Emily Silverman (17:04):Yeah. She was the chief technology officer at the Department of Health and Human Services from 2015 to 2017, I want to say. And she wrote a book called Rebel Health, which is all about patients who weren't getting what they needed from doctors and researchers and scientists. And so, they ended up building things on their own, whether it was building medical devices on their own, on the fringes or building disease registries and communities, online disease communities on their own. And it was a fabulous book and it was a fabulous interview. And ever since then I've been thinking about what might a project look like through The Nocturnists storytelling ethos that centers and focuses on the patient voice, but that's a new thought. For the first several years, it was much more focused on frontline clinicians as our audience.Why is Storytelling in Medicine so Important?Eric Topol (17:55):And then I mean the storytelling people that come to the shows or listen to the podcast, many of them are not physicians, they're patients, all sorts of people that are not part of the initial focus of who's telling stories. Now, I want to get into storytelling. This is, as you point out in another JAMA piece that kind of was introducing The Nocturnists to the medical community. We'll link to that, but a few classic lines, ‘Storytelling is medicine's currency. Storytelling is not just an act of self-healing; it may actually create better physicians.' And then also toward the end of the piece, “Some people also believe that it is unprofessional for physicians to be emotionally vulnerable in front of colleagues. The greater risk, however, is for the healthcare professional to appear superhuman by pretending to not feel grief, suffer from moral distress, laugh at work, or need rest.” And finally, ‘storytelling may actually help to humanize the physician.' So tell us about storytelling because obviously it's one of the most important, if not the most important form of communication between humans. You nailed it, how important it is in medicine, so how do you conceive it? What makes it storytelling for you?Emily Silverman (19:25):It's so surreal to hear you read those words because I haven't read them myself in several years, and I was like, oh, what piece is he talking about? But I remember now. Look, you on your program have had a lot of guests on to talk about the massive changes in medicine that have occurred, including the consolidation of it, the corporatization of it, the ways in which the individual community practice is becoming more and more endangered. And instead what's happening is practices are getting gobbled up and consolidated into these mega corporations and so on and so forth. And I just had on the podcast, the writer Dhruv Khullar, who wrote a piece in the New Yorker recently called the Gilded Age of Medicine is here. And he talks a lot about this and about how there are some benefits to this. For example, if you group practices together, you can have economies of scale and efficiencies that you can't when you have all these scattered individual self-owned practices.Emily Silverman (20:26):But I do think there are risks associated with the corporatization of healthcare. The more that healthcare starts to feel like a conveyor belt or a factory or fast food like the McDonald's of healthcare, MinuteClinic, 15 minutes in and out, the more that we risk losing the heart and soul of medicine and what it is; which is it's not as simple as bringing in your car and getting an oil change. I mean, sometimes it is. Sometimes you just need a strep swab and some antibiotics and call it a day. But I think medicine at its best is more grounded in relationships. And so, what is the modern era of medicine doing to those relationships? Those longitudinal relationships, those deeper relationships where you're not just intimately familiar with a patient's creatinine trend or their kidney biopsy results, but you know your patient and their family, and you know their life story a little bit.Emily Silverman (21:26):And you can understand how the context of their renal disease, for example, fits into the larger story of their life. I think that context is so important. And so, medicine in a way is, it is a science, but it's also an art. And in some ways it's actually kind of an applied science where you're taking science and applying it to the messy, chaotic truth of human beings and their families and their communities. So I think storytelling is a really important way to think of medicine. And then a step beyond that, not just with the doctor patient interaction, but just with the medical community and medical culture at large. I think helping to make the culture healthier and get people out of this clamped down place where they feel like they have to be a superhuman robot. Let's crack that open a little bit and remind ourselves that just like our patients are human beings, so are we. And so, if we can leverage that, and this is also part of the AI conversation that we're having is like, is AI ever going to fully substitute for a physician? Like, well, what does a physician have that AI doesn't? What does a human being have that a machine doesn't? And I think these are really deep questions. And so, I think storytelling is definitely related to that. And so, there's just a lot of rich conversation there in those spaces, and I think storytelling is a great way into those conversations.Eric Topol (22:57):Yeah. We'll talk about AI too, because that's a fascinating future challenge to this. But while you're talking about it, it reminds me that I'm in clinic every week. My fellow and I have really worked on him to talk to the patients about their social history. They seem to omit that and often times to crack the case of what's really going on and what gets the patient excited or what their concerns are really indexed to is learning about what do they do and what makes them tick and all that sort of thing. So it goes every which way in medicine. And the one that you've really brought out is the one where clinicians are telling their stories to others. Now you've had hundreds and hundreds of these physician related stories. What are some of the ones that you think are most memorable? Either for vulnerability or comedy or something that grabbed you because you've seen so many, and heard so many now.A Memorable StoryEmily Silverman (24:02):It's true. There have been hundreds of physician stories that have come through the podcast and some non-physician. I mean, we are, because I'm a doctor, I find that the work tends to be more focused around doctors. But we have brought in nurses and other types of clinicians to tell their stories as well, particularly around Covid. We had a lot of diversity of healthcare professionals who contributed their stories. One that stands out is dialogue that we featured in our live show. So most of our live shows up until that point had featured monologues. So people would stand on stage, tell their story one by one, but for this story, we had two people standing on stage and they alternated telling their story. There was a little bit more scripting and massaging involved. There was still some level of improvisation and spontaneity, but it added a really interesting texture to the story.Emily Silverman (24:58):And basically, it was a story of these two physicians who during Covid, one of them came out of retirement and the other one I think switched fields and was going to be doing different work during Covid as so many of us did. And they were called to New York as volunteers and ended up meeting in the JFK airport in 2020 and it was like an empty airport. And they meet there and they start talking and they realize that they have all these strange things in common, and they sit next to each other on the plane and they're kind of bonding and connecting about what they're about to do, which is go volunteer at the peak of Covid in New York City, and they end up staying in hotels in New York and doing the work. A lot of it really, really just harrowing work. And they stay connected and they bond and they call each other up in the evenings, how was your day? How was your day? And they stay friends. And so, instead of framing it in my mind as a Covid story, I frame it more as a friendship story. And that one just was really special, I think because of the seriousness of the themes, because of the heartwarming aspect of the friendship and then also because of the format, it was just really unusual to have a dialogue over a monologue. So that was one that stood out. And I believe the title of it is Serendipity in Shutdown. So you can check that out.Eric Topol (26:23):That's great. Love it. And I should point out that a lot of these clinical audio diaries are in the US Library of Congress, so it isn't like these are just out there, they're actually archived and it's pretty impressive. While I have you on some of these themes, I mean you're now getting into some bigger topics. You mentioned the pandemic. Another one is Black Voices in Healthcare, and you also got deep into Shame in Medicine. And now I see that you've got a new one coming on Uncertainty in Medicine. Can you give us the skinny on what the Uncertainty in Medicine's going to be all about?Uncertainty in MedicineEmily Silverman (27:14):Yes. So the American Board of Internal Medicine put out a call for grant proposals related to the topic of uncertainty in medicine. And the reason they did that is they identified uncertainty as an area of growth, an area where maybe we don't talk about it enough or we're not really sure how to tolerate it or handle it or teach about it or work with it, work through it in our practice. And they saw that as an area of need. So they put out this call for grants and we put together a grant proposal to do a podcast series on uncertainty in medicine. And we're fortunate enough to be one of the three awardees of that grant. And we've been working on that for the last year. And it's been really interesting, really interesting because the place my mind went first with uncertainty is diagnostic uncertainty.Emily Silverman (28:07):And so, we cover that. We cover diagnostic odyssey and how we cope with the fact that we don't know and things like that. But then there's also so many other domains where uncertainty comes up. There's uncertainties around treatment. What do we do when we don't know if the treatment's working or how to assess whether it's working or it's not working and we don't know why. Or managing complex scenarios where it's not clear the best way to proceed, and how do we hold that uncertainty? Prognostic uncertainty is another area. And then all of the uncertainty that pops up related to the systems issues in healthcare. So for example, we spoke to somebody who was diagnosed with colon cancer, metastatic to the liver, ended up having a bunch of radiation of the mets in the liver and then got all this liver scarring and then got liver failure and then needed a liver transplant and saw this decorated transplant surgeon who recommended the transplant was already to have that done.Emily Silverman (29:06):And then the insurance denied the liver transplant. And so, dealing with the uncertainty of, I know that I need this organ transplant, but the coverage isn't going to happen, and the spoiler alert is that he ended up appealing several times and moving forward and getting his transplant. So that one has a happy ending, but some people don't. And so, thinking about uncertainty coming up in those ways as well for patients. So for the last year we've been trying to gather these stories and organize them by theme and figure out what are the most salient points. The other exciting thing we've done with the uncertainty series is we've looked to people outside of medicine who navigate high uncertainty environments to see if they have any wisdom or advice to share with the medical community. So for example, we recently interviewed an admiral in the Navy. And this person who was an admiral in the Navy for many years and had to navigate wartime scenarios and also had to navigate humanitarian relief scenarios and how does he think about being in command and dealing with people and resources and it is life or death and holding uncertainty and managing it.Emily Silverman (30:18):And he had a lot of interesting things to say about that. Similarly, we spoke to an improvisational dancer who his whole job is to get on stage and he doesn't know what's going to happen. And to me, that sounds terrifying. So it's like how do you deal with that and who would choose that? And so, that's been really fun too, to again, go outside the walls of medicine and see what we can glean and learn from people operating in these different contexts and how we might be able to apply some of those.Eric Topol (30:51):Yeah, I mean this is such a big topic because had the medical community been better in communicating uncertainties in medicine, the public trust during the pandemic could have been much higher. And this has led to some of the real challenges that we're seeing there. So I'm looking forward to that series of new additions in The Nocturnists. Now, when you get this group together to have the live show, I take it that they're not rehearsed. You don't really know much about what they're going to do. I mean, it's kind of like the opposite, the un-TED show. TED Talk, whereby those people, they have to practice in Vancouver wherever for a whole week. It's ridiculous. But here, do you just kind of let them go and tell their story or what?Emily Silverman (31:44):In the beginning it was more open mic, it was more let them go. And then as the years went on, we moved more toward a TED model where we would pair storytellers with a story coach, and they would work together pretty intensively in the six to eight weeks leading up to the event to craft the story. That said, it was very important to us that people not recite an essay that they memorized word for word, which surprise, surprise physicians really love that idea. We're like, we're so good at memorization and we love certainty. We love knowing word for word what's going to come. And so, it's really more of this hybrid approach where we would help people get in touch with, all right, what are the five main beats of your story? Where are we opening? Where are we closing? How do we get there?Emily Silverman (32:34):And so, we'd have a loose outline so that people knew roughly what was going to, but then it wasn't until the night of that we'd fill in the blanks and just kind of see what happens. And that was really exciting because a lot of unexpected things happened. Certain stories that we thought would be really comedic ended up landing with a much more serious and thoughtful tone and vice versa. Some of the stories that we thought were really heavy would unexpectedly get laughs in places that we didn't expect. So I think the magic of live audience is, I guess you could say uncertainty of not quite knowing what's going to happen, and sort of a one time night.Eric Topol (33:17):I'd like to have a storytelling coach. That'd be cool. I mean, we could always be better. I mean, it takes me back to the first story you told with the Saturday Night Live and Kate McKinnon, you told the story, it was so great. But to make telling your story, so it's even more interesting, captivating and expressing more emotion and vulnerability and what makes the human side. I mean, that's what I think we all could do, you never could do it perfectly. I mean, that's kind of interesting how you organize that. Alright, well now I want to go back to your career for a moment because you got into The Nocturnists and these shows and you were gradually, I guess here we are in the middle and still a global burnout, depression, suicide among clinicians, especially physicians, but across the board. And you're weaning your time as a faculty member at UCSF. So what was going through your mind in your life at that time? I guess that takes us to now, too.A Career MoveEmily Silverman (34:36):Yeah, when I was a little kid, I always wanted to doctor and fully intended when I went to med school and residency to find my way as a physician and didn't really think I would be doing much else. I mean, I'd always love reading and writing and the arts, but I never quite thought that that would become as big of a piece of my career as it has become. But what ended up happening is I finished residency. I took a job in the division of hospital medicine at SF General and worked as a hospitalist for about four years and was doing that and balancing with my medical storytelling nonprofit and eventually realized that it wasn't quite working, it wasn't the right fit. And ended up taking a step back and taking a little break from medicine for a while to try to figure out how am I going to balance this?Emily Silverman (35:26):Am I going to shift and go full medicine and retire The Nocturnists? Am I going to go full art, creative journalism, writing and leave clinical medicine behind? Or am I going to continue to proceed in this more hybrid way where I do a little bit of practicing, and I do a little bit of creative on the side? And thus far, I have continued to pursue that middle road. So I ended up starting a new outpatient job, a part-time job that's actually outside of UCSF. I'm still on faculty at UCSF, but my practice now is in private practice. And so, I do that two days a week and it feeds me in a lot of ways and I'm really glad that I've continued to keep that part of myself alive. And then the rest of the days of the week I work from home and some of that is charting and doing clinical work and some of that time is podcasting and working on these other creative projects. So that's where I've landed right now. And I don't know what it will look like in 5, 10, 20 years, but for now it seems to be working.Taking On EpicEric Topol (36:31):Yeah. Well, I think it's great that you've found the right kind of balance and also the channel for getting your exceptional talent, your niche if you will, in medicine to get it out there because people I think are really deriving a lot of benefit from that. Now, another piece you wrote in the New York Times, I just want to touch on because it is tied to the burnout story. This was a great op-ed, Our Hospital's New Software Frets About My ‘Deficiencies' and I want to just warn the listeners or readers or watchers that Epic, this company that you wrote about has non-disparaging agreements with hospitals, censors hospitals and doctors to say anything bad about Epic. So when anybody ever writes something, particularly if it's published in a widely read place, the Epic company doesn't like that and they squash it and whatnot. So what was in your mind when you were writing this op-ed about Epic?Emily Silverman (37:39):So this came out of personal experience that I had where, and maybe this is some of the reason why the hospital medicine work wore me down so much is the frequent messages and alerts and popups just having a lot of fatigue with that. But also what the popups were saying, the language that they used. So you'd open up your electronic chart and a message would pop up and it would say, you are deficient, or it would say you are a delinquent. And it was this scary red box with an upside down exclamation point or something. And it really started to get to me, and this was definitely in that phase of my life and career where I was peak burnout and just kind of raging into the machine a little bit, you could say, I think right now I'm somewhat past that. I think part of the reason why is, I've been able to get myself out into a more sustainable situation, but ended up, it actually came out of me, this piece poured out of me one night.Emily Silverman (38:37):It was like two, three in the morning and my laptop was open and I was laying in bed and my husband was like, go to sleep, go to sleep. And I said, no, this wants to come out, these moments where things just, you just want to give birth, I guess, to something that wants to come out. So I wrote this long piece about Epic and how tone deaf these messages are and how clinicians are, they're working really hard in a really difficult system and just the lack of sensitivity of that language and ended up pitching that to the New York Times. And I think there was something in there that they appreciated about that. There was some humor in there actually. Maybe my Kate McKinnon side came out a little bit. So yes, that piece came out and I think I did get a message or two from a couple folks who worked at Epic who weren't thrilled.Eric Topol (39:33):They didn't threaten to sue you or anything though, right?Emily Silverman (39:35):They didn't. NoEric Topol (39:37):Good.Emily Silverman (39:37):Fortunately, yeah.Medicine and A.I.Eric Topol (39:38):Yeah. Wow. Yeah, it was great. And we'll link to that, too. Now, as they say in comedy, we're going to have a callback. We're going to go to AI, which we talked about and touched on. And of course, one of the things AI is thought that it could help reduce the burden of data clerk work that you've talked about and certainly affected you and affects every person in working in medicine. But I wanted to get to this. For me, it was like a ChatGPT moment of November 2022. Recently, I don't know if you've ever delved into NotebookLM.Emily Silverman (40:18):I have.Eric Topol (40:19):Okay, so you'll recognize this. You put in a PDF and then you hit audio and it generates a podcast of two agents, a man and a woman who are lively, who accurately take, it could be the most complex science, it could be a book, and you can put 50 of these things in and they have a really engaging conversation that even gets away from some of the direct subject matter and it's humanoid. What do you think about that?Emily Silverman (40:57):Well, a lot of what I know about AI, I learned from your book, Eric. And from the subsequent conversation that we had when you came on my podcast to talk about your book. So I'm not sure what I could teach you about this topic that you don't already know, but I think it's a deeply existential question about what it means to be human and how machine intelligence augments that, replaces that, threatens that. I don't really know how to put it. I had Jamie Metzl on the podcast. He's this great historian and science policy expert, and he was saying, I don't like the phrase artificial intelligence because I don't think that's what we're making. I think we're making machine intelligence and that's different from human intelligence. And one of the differences is human beings have physical bodies. So being a human is an embodied experience.Emily Silverman (41:57):A machine can't enjoy, I was going to say a cheeseburger and I was like, wait, I'm talking to a cardiologist. So a machine intelligence being can't enjoy a cucumber salad, a machine intelligence can't feel the endorphins of exercise or have sex or just have all of these other experiences that human beings have because they have bodies. Now, does empathy and emotion and human connection and relationships also fall into that category? I don't know. What is the substrate of empathy? What is the substrate of human connection and relationships and experience? Can it be reduced to zeros and ones or whatever, quantum computing, half zeros and half ones existing simultaneously on a vibrating plane, or is there something uniquely human about that? And I actually don't know the answer or where the edges are. And I think in 5, 10, 20 years, we'll know a lot more about what that is and what that means.Emily Silverman (42:55):What does that mean for medicine? I don't know about the human piece of it, but I think just practically speaking, I believe it will transform the way that we do medicine on so many levels. And this is what your book is about. Some of it is image analysis and EKG analysis, X-ray analysis and MRI analysis. And some of it is cognition, like diagnostic reasoning, clinical reasoning, things like that. I already use OpenEvidence all the time. I don't know if you use it. It's this basically a search engine kind of GPT like search engine that's trained on high quality medical evidence. I'm always going to OpenEvidence with questions. And I actually saw a headline recently, oh gosh, I'll have to fish it out and email it to you and you can link it in the show notes. But it's a little bit about how medical education and also medical certification and testing is going to have to quickly bring itself up to speed on this.Emily Silverman (43:56):The USMLE Step 1 exam, which all physicians in the US have to pass in order to practice medicine. When I took it anyway, which was back in I think 2012, 2013, was very recall based. It was very much based on memorization and regurgitation. Not all, some of it was inference and analysis and problem solving, but a lot of it was memorization. And as you said, I think Eric on our interview on my podcast, that the era of the brainiac memorizing Doogie Howser physician is over. It's not about that anymore. We can outsource that to machines. That's actually one of the things that we can outsource. So I'm excited to see how it evolves. I hope that medical schools and hospitals and institutions find ways safely, of course, to embrace and use this technology because I think it can do a lot of good, which is also what your book is about, the optimistic lens of your book.Eric Topol (44:55):Well, what I like though is that what you're trying to do in your work that you're passionate about is bringing back and amplifying humanity. Enriching the humanity in medicine. Whether that's physicians understanding themselves better and realizing that they are not just to be expected to be superhuman or non-human or whatever, to how we communicate, how we feel, experience the care of patients, the privilege of care of patients. So that's what I love about your efforts to do that. And I also think that people keep talking about artificial general intelligence (AGI), but that's not what we are talking about here today. We're talking about human emotions. Machines don't cry, they don't laugh. They don't really bond with humans, although they try to. I don't know that you could ever, so this fixation on AGI is different than what we're talking about in medicine. And I know you're destined to be a leader in that you already are. But I hope you'll write a book about medical storytelling and the humanity and medicine, because a natural for this and you're writing it is just great. Have you thought about doing that?Emily Silverman (46:24):It's very kind of you to say. I have thought about if I were to embark on a book project, what would that look like? And I have a few different ideas and I'm not sure. I'm not sure. Maybe I'll consult with you offline about that.Eric Topol (46:42):Alright, well I'd like to encourage you because having read your pieces that some of them cited here you have it. You really are a communicator extraordinaire. So anyway, Emily, thank you for joining today. I really enjoyed our conversation and your mission not just to be a physician, which is obviously important, but also to try to enhance the humanity in medicine, in the medical community particularly. So thank you.Emily Silverman (47:14):Thank you. Thank you for having me.***************************************Thanks for listening, watching or reading Ground Truths. Your subscription is greatly appreciated.If you found this podcast interesting please share it!That makes the work involved in putting these together especially worthwhile.All content on Ground Truths—newsletters, analyses, and podcasts—is free, open-access.Paid subscriptions are voluntary and all proceeds from them go to support Scripps Research. They do allow for posting comments and questions, which I do my best to respond to. Many thanks to those who have contributed—they have greatly helped fund our summer internship programs for the past two years. And such support is becoming more vital In light of current changes of funding by US biomedical research at NIH and other governmental agencies. Get full access to Ground Truths at erictopol.substack.com/subscribe

Susannah Fox is a health and technology strategist. Her book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care, was recently published by MIT Press. She is a former Chief Technology Officer for the U.S. Department of Health and Human Services, where she led an open data and innovation lab. She has served as the entrepreneur-in-residence at the Robert Wood Johnson Foundation and she directed the health portfolio at the Pew Research Center's Internet Project.

In this episode, hosts Reed Smith and Chris Boyer celebrate some of the most memorable guest interviews of the year. First, hear from Susannah Fox who discussed insights from her new book about digital innovation, then Jeremy Mittler joins for a good discussion on privacy-first advertising strategies. Lastly, Danny Fell joins to discuss healthcare disruption. These are a few of our best interviews of the year. Be sure to vote for your most favorite episode and favorite guest in our annual 2024 Touch Point Podcast Listener Survey.  Mentions From the Show: TP370 – Has the Social Internet Democratized Patient Empowerment? Rebel Health book SusannahFox.com Susannah Fox on LinkedIn TP381 – Digital Advertising's Role in Patient Experience Jeremy Mittler on LinkedIn TP383 – Does Consumerism Drive Disruption? Danny Fell on LinkedIn BVK.com TouchPoint 2024 Listener Survey Reed Smith on LinkedIn Chris Boyer on LinkedIn Chris Boyer website Chris Boyer on BlueSky Reed Smith on BlueSky Learn more about your ad choices. Visit megaphone.fm/adchoices

Hosts Gil Bashe and Gregg Masters welcome Susannah Fox, author of “Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care.” Susannah is an advocate for patient-led innovation, inspiring us all to reimagine healthcare from the perspective of those who matter most: the people it serves. Her insights remind us of the power of community, collaboration, and human-centered care in shaping the future of health. Susannah is a champion for patient empowerment and an advocate for leveraging the power of networks to advance health and care. She has an extensive background in health innovation, and has inspired healthcare organizations to focus on listening to and learning from patients, and her work emphasizes the impact of communities on health outcomes. To stream our Station live 24/7 visit www.HealthcareNOWRadio.com or ask your Smart Device to “….Play Healthcare NOW Radio”. Find all of our network podcasts on your favorite podcast platforms and be sure to subscribe and like us. Learn more at www.healthcarenowradio.com/listen

Early online patient communities were pioneers in sharing personal health data to support others with similar conditions. In this episode, Susannah Fox, anthropologist and author of Rebel Health, dives into the evolving landscape of health care, where the traditional power dynamics between patients and providers are shifting. Susannah explores the concept of co-production of care, where patients' experiences are valued as much as scientific knowledge. She highlights the rise of patient-led communities and innovations, particularly in diabetes care, where patients have hacked their devices to improve their outcomes. Susannah also discusses AI's role in health care, emphasizing the importance of integrating patient experiences into AI tools.  Tune in and learn how patients are revolutionizing health care and shaping its future! Learn more about your ad choices. Visit megaphone.fm/adchoices

Susannah Fox, Author of Rebel Health, shared the story behind her title with us on September 4, 2024★★★★★Of the interview, our founder and host, Sue Rocco, says: "Listen in as I sit down with with Susannah to learn about her important role as Chief Technology Officer under the President Obama administration in the Department of Health and Human Services, how a degree in Anthropology has assisted with her work in technology, and how she coined "Peer-to-Peer" advice within the health field."ABOUT SUSANNAH:Susannah Fox is a health and technology strategist. Her book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care, was recently published by MIT Press. She is a former Chief Technology Officer for the U.S. Department of Health and Human Services, where she led an open data and innovation lab. She has served as the entrepreneur-in-residence at the Robert Wood Johnson Foundation and she directed the health portfolio at the Pew Research Center's Internet Project.Support this podcast at — https://redcircle.com/women-to-watch-r/donationsAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

Episode 76 of the podcast, Susannah Fox, author of Rebel Health, delves into the empowering world of peer-to-peer healthcare. Fox highlights how this model allows patients to connect with one another, share experiences, and offer mutual support, particularly when facing similar diagnoses. She stresses the importance of open access to medical research, advocating for the dissemination of valid scientific information to patients. For Fox, this transparency is crucial for empowering individuals to make informed health decisions and curbing the spread of disinformation, ultimately fostering a more informed and engaged patient community. "Peer-to-peer healthcare, this connection that happens between and among patients and caregivers, that is the megatrend that I think is going to transform healthcare." - Susannah Fox Susannah Fox, a distinguished leader in healthcare innovation, has made significant contributions as the former Chief Technology Officer for the US Department of Health and Human Services. With her extensive experience in open data and innovation, including her role as an entrepreneur in residence at the Robert Wood Johnson Foundation, Susannah has been at the forefront of driving patient-led innovations. Her profound understanding of peer-to-peer healthcare and combating misinformation in the medical field has made her a trailblazer in the industry. Through her unique journey from a researcher to a prominent figure in healthcare, Susannah has become a valuable asset for patients, caregivers, clinicians, and policymakers seeking to enhance patient engagement and improve healthcare outcomes. In this episode, you will be able to: Discover the power of patient-led innovations Explore the benefits of peer-to-peer healthcare interactions Uncover strategies for combating misinformation in the healthcare landscape. The resources mentioned in this episode are: Obtain your copy of Susannah Fox's book Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care from any major book retailer or from her website. Connect with Susannah Fox: LinkedIn X Instagram Threads Connect with Andrea on Instagram (@andreaaustinmd) or LinkedIn about the show and more, or visit her website www.andreaaustinmd.com.

About Susannah:Susannah Fox is a health and technology strategist. Her book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care, was recently published by MIT Press. She is a former Chief Technology Officer for the U.S. Department of Health and Human Services, where she led an open data and innovation lab. She has served as the entrepreneur-in-residence at the Robert Wood Johnson Foundation and she directed the health portfolio at the Pew Research Center's Internet Project. Links:Visit Susannah's website at susannahfox.comFind Susannah on LinkedIn, Twitter/X, Threads, and Instagram

70% of U.S. adults have accessed health information online in the past year.A revealing statistic, highlighting the increasing reliance on digital resources for healthcare guidance.As this week's guest, Susannah Fox, illuminates, patient-led healthcare holds tremendous potential for transforming our health systems. With her extensive experience as a distinguished researcher and former Chief Technology Officer of the U.S. Department of Health and Human Services, Susannah is at the forefront of this revolution.In this episode, Susannah shares insights from her new book, "Rebel Health," an action-oriented and radically hopeful field guide to an underground, patient-led movement. She explores the roles of seekers, solvers, networkers, and champions within the ecosystem of patient-led healthcare, emphasizing the power of the internet as a place for community, collaboration, and connection.Susannah discusses how re-imagining the patient-clinician dynamic can counteract misinformation and foster better health outcomes. She highlights the importance of including patients in the development of healthcare tools, warning against repeating past mistakes.Her message is clear: technology, when used for good, can connect us in powerful ways. "You are not alone," Susannah assures. "There are people who would love to help you if only they knew how to find you."Together, we can forge new links between innovators and those in power, learn from our past, and harness technology to build a more inclusive, supportive, and effective healthcare system.Follow me on Instagram and Facebook @ericfethkemd and checkout my website at www.EricFethkeMD.com. My brand new book, The Privilege of Caring, is out now on Amazon! https://www.amazon.com/dp/B0CP6H6QN4

For years, the reigning paradigm in health care has been “Doctor knows best.” Providers rarely sought input from patients about their needs or experience. That picture has been changing, though, as more people have been using online tools to band together and find solutions for themselves and their loved ones. Susannah Fox describes the patient-led […]

  Anyone who has fallen off the conveyor belt of mainstream health care and into the shadowy corners of illness knows what a dark place it is to land. Where is the infrastructure, the information, the guidance? What should you do next? In her new book, Rebel Health, Susannah Fox draws on twenty years of tracking the expert networks of patients, survivors, and caregivers who have come of age between the cracks of the healthcare system to offer a way forward. Covering everything from diabetes to ALS to Moebius Syndrome to chronic disease management, Fox taps into the wisdom of these individuals, learns their ways, and fuels the rebel alliance that is building up our collective capacity for better health. Rebel Health shows how the next wave of health innovation will come from the front lines of this patient-led revolution. Join us for an event that is both proactive and innovative, as Susanna Fox paves the way for a collective capacity for better health and a patient-led revolution in medical care. Susannah Fox helps people navigate health and technology. She served as Chief Technology Officer for the U.S. Department of Health and Human Services, where she led an open data and innovation lab. Prior to that, she was the entrepreneur-in-residence at the Robert Wood Johnson Foundation and directed the health portfolio at the Pew Research Center's Internet Project. Sally James is a writer whose curiosity about people has taken her from jails to hospitals to schools to research labs. Once a staff member on daily newspapers, she has been an independent writer on medicine and science for many years. She has reported stories for the South Seattle Emerald, Parentmap, Seattle Business, and other outlets. She is a former president of the Northwest Science Writers Association, a nonprofit supporting science communication.   Buy the Book Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care The Elliott Bay Book Company

Dr. Blaise Baxter discusses the fifth leading cause of death for Americans: stroke. Survive Stroke Week takes place May 6-12 and is an annual observance aiming to educate Americans about stroke symptoms and lifesaving treatment options. Then, healthcare advocate Susannah Fox talks about her new book, "Rebel Health," an action-oriented and radically hopeful field guide to the underground, patient-led revolution for better health and health care.

We're excited to welcome to the podcast Susannah Fox, a renowned researcher who has spent over 20 years studying how patients and caregivers use the internet to gather information and support each other. Susannah has collected countless stories from the frontlines of healthcare and has keen insights into how patients are stepping into their power to drive change. Susannah recently published a book called "Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care." In it, she introduces four key personas that represent different ways patients and caregivers are shaking up the status quo in healthcare: seekers, networkers, solvers, and champions. The book aims to bridge the divide between the leaders at the top of the healthcare system and the patients, survivors, and caregivers on the ground who often have crucial information and ideas that go unnoticed. By profiling examples of patient-led innovation, Susannah hopes to inspire healthcare to become more participatory. In our conversation, we dive into the insights from Susannah's decades of research, hear some compelling stories of patients, and discuss how medicine can evolve to embrace the power of peer-to-peer healthcare. As you'll hear, this is a highly personal episode as Susannah's work resonates with both of us and our individual and shared health experiences. Let's dive into our conversation with Susannah Fox. --------------------- If you enjoy our podcasts, please subscribe and leave a positive rating or comment. Sharing your positive feedback helps us reach more people and connect them with the world's great minds. Subscribe to get Artificiality delivered to your email Learn about our book Make Better Decisions and buy it on Amazon Thanks to Jonathan Coulton for our music

Anyone who has fallen off the conveyer belt of mainstream health care and into the shadowy corners of illness knows what a dark place it is to land. Where is the infrastructure, the information, the guidance? What should you do next? Susannah Fox draws on 20 years of tracking the expert networks of patients, survivors, and caregivers who have come of age between the cracks of the health-care system to offer a way forward. Covering everything from diabetes to ALS to Moebius Syndrome to chronic disease management, Fox taps into the wisdom of these individuals, learns their ways, and fuels the rebel alliance that is building up our collective capacity for better health. Join us for a special online-only talk as Fox discusses the issues raised in her new book Rebel Health, an action-oriented and radically hopeful field guide to the underground, patient-led revolution for better health and health care. Fox says the next wave of health innovation will come from the front lines of this patient-led revolution. Fox identifies and describes four archetypes of this revolution: seekers, networkers, solvers and champions. She has collected tips, such as picking a proxy to help you navigate the relevant online communities or learning how to pitch new ideas to investors and partners or new treatments to the FDA. On a systemic level, this “rebel health” movement is a competitive advantage for businesses, governments and organizations to understand and leverage the power of connection among patients, survivors and caregivers. Learn more about your ad choices. Visit megaphone.fm/adchoices

Today's guest is Susannah Fox, author of Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care. The book is a deep dive into the expert network of patients, survivors and caregivers who are charting a new path of innovation and research. It is for anyone who feels alone, forgotten or lost in the shadows of suffering as they navigate a new diagnosis. But, it's also for anyone working inside healthcare who is fed up with the status quo. We discuss:How patients – like those first affected by long COVID - accelerate solutions by making invisible problems visible That data liberation is often the foundation for patient rebel movementsThe pop up peer groups forming in Amazon reviewsA framework for understanding, and embracing patient expertise: seekers, networkers, solvers and championsSusannah reminds all innovators to talk with people living with rare and life-changing diagnoses: “If you are going to try to understand the intersection of healthcare and technology, you need to put down your clipboard – which is the classic status symbol of a survey researcher – and get out there and just talk to people. Talk to people especially who are dealing with rare and life-changing diagnoses, because those are the people who are going to use technology in ways that we can't even imagine.”Relevant LinksSusannah's book Rebel HealthSusannah's blog: Wow! How? HealthAn article about how patient-led research could speed up medical innovationA story about Tidepool Loop receiving FDA clearanceOpenAPS and #WeAreNotWaitingHugo Campos's TedX talk about not being able to access his cardiac device dataGraphic used by Sarah Riggare to show the time spent in self-care for Parkinson's diseaseAbout Our GuestSusannah Fox is a health and technology strategist. Her book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care, was recently published by MIT Press. She is a former Chief Technology Officer for the U.S. Department of Health and Human Services during the Obama Administration, where she led an open data and innovation lab. Prior to federal service, she was the entrepreneur-in-residence at the Robert Wood Johnson Foundation. For 14 years she directed the health portfolio at the Pew Research Center's Internet Project where she helped define a new market at the intersection of health, social media, and patient engagement. Fox currently serves on the board of directors of Cambia Health Solutions of Portland, OR, and Hive Networks of Cincinnati, OH. She is an advisor to Alladapt Immunotherapeutics, Archangels, Article 27, Atlas of Caregiving, Before Brands, Citizen, Equip Health, Faster Cures, and the Lemelson Center for the Study of Invention and Innovation at Smithsonian Institution. Fox is a graduate of Wesleyan University with a degree in anthropology. She is the mother of two children, a caregiver for elders, and lives in Washington, DC,...

Ever feel like you're lost in the healthcare maze, fighting for answers alone? Turns out, you're not. Patient communities are fueling a revolution that's changing healthcare. In this episode, Susannah Fox, author of Rebel Health, reveals how patients and caregivers are driving innovation that the traditional system can't, or won't, deliver.We cover:The Four Patient Archetypes: Seeker, Networker, Solver, and Champion--which one are you?Why certain populations get ignored, and how to change thatHow founders can leverage patient power to build better, more impactful solutionsThe debate over whether (and how) patients should be compensated for collaborating with companiesSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

In her new book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care., Susannah Fox focuses on the health care needs of patients and caregivers. She points…

Susannah Fox is the former Chief Technology Officer of the US Department of Health and Human Services. A long time advocate for peer to peer healthcare innovation, Susannah's new book is Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care. We discuss what happens when money isn't enough, where will you turn? Learn more about your ad choices. Visit megaphone.fm/adchoices

In today's episode, I speak with Susannah R Fox about her newly released book Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care.  Susannah takes an important look at communities, which make the difference when the medical field ignores their concerns. The read is an exquisite example of  health design thinking and storytelling.  From 2015-2017, Susannah served as the Chief Technology Officer of the U.S. Department of Health and Human Services (HHS). As CTO,  she created opportunities for entrepreneurship and innovation across the Department's 27 divisions and 80,000+ employees, helping HHS harness the power of data and technology to improve the health and welfare of the nation. Prior to joining the Obama Administration, she served as the Entrepreneur in Residence at the Robert Wood Johnson Foundation, helping to encourage employees to experiment and catalyze new ways to think about challenges. From 2000-14, she was an Associate Director of the Internet Project at the the Pew Research Center, where she directed the health and technology portfolio. 

Susannah Fox's "Rebel Health" on the power of Seekers, Networkers, Solvers, & Champions in driving patient-led innovation & the communal fight against disease. Full 36-min episode on YouTube Two five-minute clips on YouTube. Click here to view or download the printable newsletter Contents Table of Contents Toggle EpisodeProemPodcast introRealizing the Fragility of HealthTransition from Research to ActivismThe Role of Perception in HealthcareA System Versus Community View of Healthcare InnovationHacking Healthcare and StartupsMotivation to Solve Call to actionSeekersNetworkersSolversChampionsNetworker, Seeker, Solver, ChampionNetworker, Champion, SolverPersisting BossLeading by Helping the HelpersActors on the Stage of InnovationEmergence of ChampionsServing CommunitiesRevolutionary Energy – Regina Holliday and Casey QuinlanDraft Counseling – Working from the InsideChampions Stoke FiresRebels in Health – You Are Not AloneC-Suite and Government Meet RebelsStep into Your PowerThe Enemy is Disease​ReflectionPodcast Outro Episode Proem Rebel Health by Susannah Fox As a student of advocacy and activism, I draw warmth from the heat of others' passion, marvel at the diversity of origin stories, and burst with curiosity about what might come next. How did they start on this journey, and why do they persist? I've been a nurse for 50 years. One of the best things about nursing for me was the license to be nosy – for a brief time - a visit or a stay. This nosiness melds nicely as a podcaster for an episode. I often ask guests, “When did you realize health was fragile?” Another student of advocacy and activism is our guest, Susannah Fox.  Susannah is a health and technology strategist. Her book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care, has just been published by MIT Press. She is a former Chief Technology Officer for the U.S. Department of Health and Human Services, where she led an open data and innovation lab. She has served as the entrepreneur-in-residence at the Robert Wood Johnson Foundation, and she directed the health portfolio at the Pew Research Center's Internet Project. Podcast intro Welcome to Health Hats, the Podcast. I'm Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all of this. Health Hats: Susannah Fox, how are you? It's so good to see you. I've been looking forward to this. You've been my idol for a long time. I first learned about you when you were at Pew Research Center, and I thought your perspective and research were so helpful. Realizing the Fragility of Health When did you first realize health was fragile? Susannah Fox: Wow. The first time I realized that health was fragile was when my dad was a flatliner on the table at the hospital after his heart attack. He was in his fifties and someone who, to anyone who looked at him, would've thought he was a health nut. He went four miles three times a week. He was fit. He loved to hike. He was a mountain climber. And yet he had genetically high cholesterol and a hidden, blocked artery. So, they luckily were able to revive him, and he had open heart surgery and lived long enough to then get kidney cancer in his sixties and melanoma in his seventies. My dad was my model for lifelong health and perseverance. I love this question because it explains how you learned that health is fragile. But then also what? What happened when you learned that health was fragile? For me, it was seeing my dad persevere to regain his health each time he had a setback. Health Hats: That's admirable. Transition from Research to Activism Health Hats: You had these experiences and are now in activism. How did that path happen? How did you get where you are now?

In this episode, hosts Chris Boyer and Reed Smith discuss the evolution of the social internet, illustrating how as the technology has evolved, the uses of social media by patient seeking care has also changed - yet fundamentally remained the same. Then they are joined by Susannah Fox, author of the new book “Rebel Health - A Field Guide to the Patient-Led Revolution in Medical Care” who shares how the next wave of health innovation will come from the front lines of the patient-led revolution.   Mentions from the Show: Pew Research: Americans' Social Media Use Rebel Health book SuannahFox.com Susannah Fox on LinkedIn Learn more about your ad choices. Visit megaphone.fm/adchoices

Have you heard about the rebel alliance of healthcare?  That's what my guest calls the patient-led movement to improve health & health care. Susannah Fox served as the Chief Technology Officer for the U.S. Department of Health & Human Services and she's got a new book out called Rebel Health. If you're thinking hey – that's sounds like a lot of the diabetes community – oh yeah. You're right and we talk about it. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Learn more about "Rebel Health" and order the book here: Rebel Health (mit.edu) Find out more about Moms' Night Out  Please visit our Sponsors & Partners - they help make the show possible! Learn more about Gvoke Glucagon Gvoke HypoPen® (glucagon injection): Glucagon Injection For Very Low Blood Sugar (gvokeglucagon.com) Omnipod - Simplify Life Learn about Dexcom  Edgepark Medical Supplies Check out VIVI Cap to protect your insulin from extreme temperatures Learn more about AG1 from Athletic Greens  Drive research that matters through the T1D Exchange The best way to keep up with Stacey and the show is by signing up for our weekly newsletter: Sign up for our newsletter here Here's where to find us: Facebook (Group) Facebook (Page) Instagram Twitter Check out Stacey's books! Learn more about everything at our home page www.diabetes-connections.com  Reach out with questions or comments: info@diabetes-connections.com    

AHIP President and CEO Matt Eyles and co-host Laura Evans were joined by Susannah Fox, principal of Internet Geologist, LLC, for a wide-ranging discussion on what being a caregiver means in today's health system. They covered the intersection of technology and caregiving, and touched on how employers can better support caregivers.

Thank you for supporting us through 100 episodes and getting us to 100,000 downloads! In this episode, Bon and Rob play back some of our favorite clips from early episodes and reminisce about all we have learned along the way. Guests featured in this episode: EP 1: Ellen Lupton, Sharing the Power of Design Listen on Apple Podcasts EP 2: Nzinga Harrison, Designing for Mental Health Listen on Apple Podcasts EP 3: Mike Natter, Art, Storytelling, and Medicine Listen on Apple Podcasts EP 7: John Maeda, Technology and Design Listen on Apple Podcasts EP 8: Giorgia Lupi, Designing with Data Listen on Apple Podcasts EP 9: Craig Wilkins, Spacial Justice Listen on Apple Podcasts EP 10: BJ Miller, Designing Death Listen on Apple Podcasts EP 18: Cliff Kuang, Designing a User Friendly World Listen on Apple Podcasts EP 59: Susannah Fox, Designing Peer-to-Peer Health Listen on Apple Podcasts Episode Links and Mentions: Thad Ziolkowski's on Surfing and Addiction  Rob's blood glucose nightlight: https://glowcose.com/ Podcast statistics referenced from Daniel Ruby via Demand Sage: https://www.demandsage.com/podcast-statistics Episode Website: https://www.designlabpod.com/episodes/episode100 Show Sources & Links: Sign-up for Design Lab Podcast's Newsletter Previous Episode Newsletters and Shownotes Follow @DesignLabPod on Twitter Instagram LinkedIn Facebook Follow @BonKu on Twitter & Instagram Check out the Health Design Lab Production by Robert Pugliese Edit by Fernando Queiroz Cover Design by Eden Lew Theme song by Emmanuel Houston Indexed in the Library of Congress: ISSN 2833-2032

How can peer to peer connection make a healthier society? Can Amazon reviews give us fresh insight into our health? Why do on-line patient communities represent an incredible untapped resource in healthcare? How can a co-designed death give us a fuller life? Susannah Fox will help us answer these questions! Fox is a health and information technology researcher based in Washington, DC. She is a former Chief Technology Officer for the U.S. Department of Health and Human Services during the Obama Administration, where she led an open data and innovation lab. Prior to federal service, she was the entrepreneur-in-residence at the Robert Wood Johnson Foundation. For 14 years she directed the health portfolio at the Pew Research Center's Internet Project where she helped define a new market at the intersection of health, social media, and patient engagement. Fox currently serves on the board of directors of Cambia Health Solutions of Portland, OR, and Hive Networks of Cincinnati, OH. She is an advisor to Alladapt Immunotherapeutics, Archangels, Article 27, Atlas of Caregiving, Before Brands, Citizen, Equip Health, Faster Cures, and the Lemelson Center for the Study of Invention and Innovation at Smithsonian Institution. Fox is a graduate of Wesleyan University with a degree in anthropology. She is the mother of two children, a caregiver for elders, and lives in Washington, DC, with her husband, Eric Halperin.

On the show today “Health/Technology Researcher” — and returning champion — Susannah Fox joins me along with Vicky Rideout, a researcher on children and media to discuss the findings from their brand new study: Coping with COVID-19: How Young People Use Digital Media to Manage Their Mental Health. What is absolutely fascinating about all of this is that there are actually two sets of data, one concluded in 2018 and then, with the pandemic, they repeated the same study and compared the differences. Spoiler – the results were shocking and yet… not shocking as you can imagine. Thank you to the generous sponsors who made this study possible: Hopelab, California Health Care Foundation, and Common Sense Media.

On this episode of HealthChangers, we share a conversation with Cambia’s CEO Mark Ganz and Susannah Fox, who serves as a researcher and adviser to health and technology companies. Mark is retiring at the end of 2020; during his tenure as CEO, he’s guided the company and industry along a path of reimagining and reshaping health care to be more empathetic, transparent, and economically sustainable. Find all of our network podcasts on your favorite podcast platforms and be sure to subscribe and like us. Learn more at www.healthcarenowradio.com/listen/

An overabundance of info makes it difficult to find trusted sources, reliable guidance when needed, in manner, context, & useful format. With Janice McCallum. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem 00:53. 1 Introducing Janice McCallum 03:32. 2 Find a drop in the firehose 04:47. 2 Infodemiology 08:28. 3 Finding information: PubMed and search engines 13:23. 4 Absorbing the information found 16:34. 5 What do you trust? 19:64. 5 Trust but verify. Follow the money. 21:36. 6 Never trust a headline 25:16. 7 Information from patient communities 26:48. 7 Know the source 30:45. 8 Trusted information, trusted sources, Twitter 33:21. 8 Good information crowding out bad information 38:57. 10 Reflection 44:15. 11 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger Sponsored by Abridge Thanks to these fine people who inspired me for this episode: Andy Oram, Tyson Ortiz, Carla Berg, Grace Cordovano, Monica Cunningham, Gunther Eysenbach, Colin Hung, Marilyn Mann, Susan Woods Links Please read Report from The Guardian and Kaiser Health News about More than 900 US healthcare workers have died of COVID-19-and the toll is rising Resources and references: https://pubmed.ncbi.nlm.nih.gov/12517369/ (Gunther Eysenbach’s 2002 article on Infodemiology) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1839505/ (Gunther Eysenbach’s 2006 article on Infodemiology) https://pubmed.ncbi.nlm.nih.gov/32310818/ (April 2020 article, where infodemiology is study of info usage patterns. Fulltext link for 2020 article: https://www.jmir.org/2020/4/e16206/ WHO Infodemiology Conference webpage: https://www.who.int/news-room/events/detail/2020/06/30/default-calendar/1st-who-infodemiology-conference Twitter thread on WHO Infodemiology conference: https://twitter.com/juansarasua/status/1277596552719224833 First Draft, UK org fighting misinformation, which participated in the WHO Infodemiology conference: https://firstdraftnews.org/ Check out Information Disorder report on their site. For understanding medical research studies, Between The Lines, a book by Marya Zilberberg, MD: https://www.amazon.com/Between-Lines-Finding-Medical-Literature/dp/0985456205/ref=cm_cr_arp_d_product_top?ie=UTF8 https://participatorymedicine.org/epatients/2008/05/two-research-papers-published-on-patientslikeme.html (JM comment on infodemiology on post in Society for Participatory Medicine (S4PM blog). https://participatorymedicine.org/epatients/2009/09/health-it-policy-e-patients-want-access.html (See JM comment to Susannah Fox’s post of S4PM blog). Medical Library Association (MLA): https://www.mlanet.org/page/find-good-health-information National Library of Medicine (NLM): http://www.healthfinder.gov/ ; https://medlineplus.gov/ Merck Manual, Consumer Edition: https://www.merckmanuals.com/home Also mentioned consumer health sites: Healthline.com, EveryDayHealth.com, WebMD.com, MayoClinic.org and Patient community sites: PatientsLikeMe.com, Inspire.com. The Bulwork Related podcasts and blogs Health Hats series about CDS, Clinical Decision Support, Making Health Choices. About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen,

An overabundance of info makes it difficult to find trusted sources, reliable guidance when needed, in manner, context, & useful format. With Janice McCallum. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem 00:53. 1 Introducing Janice McCallum 03:32. 2 Find a drop in the firehose 04:47. 2 Infodemiology 08:28. 3 Finding information: PubMed and search engines 13:23. 4 Absorbing the information found 16:34. 5 What do you trust? 19:64. 5 Trust but verify. Follow the money. 21:36. 6 Never trust a headline 25:16. 7 Information from patient communities 26:48. 7 Know the source 30:45. 8 Trusted information, trusted sources, Twitter 33:21. 8 Good information crowding out bad information 38:57. 10 Reflection 44:15. 11 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger Sponsored by Abridge Thanks to these fine people who inspired me for this episode: Andy Oram, Tyson Ortiz, Carla Berg, Grace Cordovano, Monica Cunningham, Gunther Eysenbach, Colin Hung, Marilyn Mann, Susan Woods Links Please read Report from The Guardian and Kaiser Health News about More than 900 US healthcare workers have died of COVID-19-and the toll is rising Resources and references: https://pubmed.ncbi.nlm.nih.gov/12517369/ (Gunther Eysenbach's 2002 article on Infodemiology) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1839505/ (Gunther Eysenbach's 2006 article on Infodemiology) https://pubmed.ncbi.nlm.nih.gov/32310818/ (April 2020 article, where infodemiology is study of info usage patterns. Fulltext link for 2020 article: https://www.jmir.org/2020/4/e16206/ WHO Infodemiology Conference webpage: https://www.who.int/news-room/events/detail/2020/06/30/default-calendar/1st-who-infodemiology-conference Twitter thread on WHO Infodemiology conference: https://twitter.com/juansarasua/status/1277596552719224833 First Draft, UK org fighting misinformation, which participated in the WHO Infodemiology conference: https://firstdraftnews.org/ Check out Information Disorder report on their site. For understanding medical research studies, Between The Lines, a book by Marya Zilberberg, MD: https://www.amazon.com/Between-Lines-Finding-Medical-Literature/dp/0985456205/ref=cm_cr_arp_d_product_top?ie=UTF8 https://participatorymedicine.org/epatients/2008/05/two-research-papers-published-on-patientslikeme.html (JM comment on infodemiology on post in Society for Participatory Medicine (S4PM blog). https://participatorymedicine.org/epatients/2009/09/health-it-policy-e-patients-want-access.html (See JM comment to Susannah Fox's post of S4PM blog). Medical Library Association (MLA): https://www.mlanet.org/page/find-good-health-information National Library of Medicine (NLM): http://www.healthfinder.gov/ ; https://medlineplus.gov/ Merck Manual, Consumer Edition: https://www.merckmanuals.com/home Also mentioned consumer health sites: Healthline.com, EveryDayHealth.com, WebMD.com, MayoClinic.org and Patient community sites: PatientsLikeMe.com, Inspire.com. The Bulwork Related podcasts and blogs Health Hats series about CDS, Clinical Decision Support, Making Health Choices. About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen,

On today's show, my good friend, long-time partner-in-crime advocate, and Princess Leia Jedi Master of Health Tech, Susannah Fox, who I consider to be one of the most insightful, introspective and influential unicorn, renaissance human beings around. Susannah was the Chief Technology Officer for the U.S. Department of Health and Human Services and is currently on the boards of Cambia and Hive, and provides research and advice about navigating the intersection of health and technology at her consultancy, Internet Geologist. Her passion has been—and quite possibly forever shall be—the fundamental power of peer-to-peer health. You know, that whole "You're Not Alone" thing? "Connecting with people with shared and similar experiences where there's no judgment or stigma?" "Tribalism done right for the purpose of lifehacking your way through acute illness and chronic conditions?" That is Susannah's passion. See if you can spot the gestalt moment where I nearly lost my mind (in the best sense) after hearing that—of all places — the thrush of modern-day health lifehackery is coming from Amazon reviews. On that note, enjoy my conversation with Susannah Fox. Follow Susannah on Twitter @SusannahFox.

We talk with Susannah Fox, former Chief Technology Officer of the U.S. Department of Health and Human Services. Susannah is a vocal advocate of peer to peer communities’ ability to increase people’s access to information, data, & tools necessary to solve their own problems related to health & well-being.

When we or a loved one gets a new diagnosis or has a health-related question, we turn to the internet for information and advice. Our guest on HealthChangers today has been working to find new ways to connect people online with communities who share the same needs and concerns. Susannah Fox is a researcher and advisor to health and technology companies. She’s the former Chief Technology Officer for the U.S. Department of Health and Human Services and she worked previously at the Pew Research Center. Find all of our show podcasts on your favorite podcast platforms. www.healthcarenowradio.com/listen/

When we or a loved one gets a new diagnosis or has a health-related question, we turn to the internet for information and advice. Our guest on HealthChangers today has been working to find new ways to connect people online with communities who share the same needs and concerns. Susannah Fox is a researcher and advisor to health and technology companies. She’s the former Chief Technology Officer for the U.S. Department of Health and Human Services and she worked previously at the Pew Research Center.

This week hosts Mark Masselli and Margaret Flinter with renowned health industry analyst Susannah Fox who served as Chief Technology Officer at the US Department of Health and Human Services. Ms. Fox has been studying the growing impact of the internet on health care and discusses her recent report on how young health consumers are accelerating the adoption of digital technologies in the health care experience. The post Susannah Fox, Former Chief Technology Officer at HHS, Analyzes Young Consumers Push Towards Digital Health appeared first on Healthy Communities Online.

with Susannah Fox (@susannahfox), Anil Sethi (@anilsethiusa / @ciitizencorp), Vijay Pande (@vijaypande), and Sonal Chokshi (@smc90) The problem of "dark data" in healthcare isn't just a feel-good empowerment thing, but a structural issue that leads to miscommunication and extra friction, different players in the entire healthcare system not being able to collaborate with each other, and just major missed opportunities all round. And yes, it also leads to lack of empowerment for patients, not to mention doctors too (who often have less than 30 minutes on site to do their jobs). But we already know all that. What's not clear is WHY and HOW is this the case, when the very point of HIPAA -- the Health Insurance Portability and Accountability Act (of 1996!) -- is to make data portable, not private. That is, IF patients know to ask for it... and can easily get it. So what if we could have a sort of permissioned "permissionless innovation" for healthcare data, not only bringing all that dark data to light, but more importantly -- borrowing from the history of internet innovation -- letting all sorts of expected and unexpected uses be built on top as a result? What happens when data and entities can talk to each other (à la APIs) through patients at the center of the circle of data? From the Dr. Google problem (or opportunity!) to clinical trials and even the opioid crisis, we -- Susannah Fox (former CTO of the U.S. Department of Health and Human Services); Anil Sethi (CEO and founder of Ciitizen); and a16z bio general partner Vijay Pande; in conversation with Sonal Chokshi -- explore all this and more in this episode of the a16z Podcast. Let there be light!

Episode 5 brings a unique view on healthcare from writer, speaker, consultant and former US Health & Human Services CTO, Susannah Fox.  Listen in on a discussion with Dr. Kvedar that ranges from depression and health behaviors in teens, how digital health engenders peer support and on the role of data as a disrupter in... Read more »

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 them@healthcaremarketingnetwork.com. 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 janet@healthcaremarketingnetwork.com. Thanks for listening to the Get Social Health podcast. Reach out to Susannah Fox:  https://www.linkedin.com/in/susannah-fox-b27450/  

Susannah Fox eloquently described her job as U.S. HHS Chief Technology Officer – a role which just came to an end in the transition to a new administration – as “helping Health and Human Service (HHS) leadership harness the power of data, technology, and innovation to improve the health and welfare of the nation.” It […]

Susannah Fox, CTO at the U.S. Department of Health and Human Services, discusses the Invent Health initiative and the potential she sees in the creation of new tools in and around improving innovation in health care. GUEST: Susannah Fox, HHS HOST: Unity Stoakes, StartUp Health LOCATION: StartUp Health Festival, San Francisco, CA IN THIS EPISODE: “Invent Health” An Innovation Nation The Potential in the Creation of Tools, Through the “ Invent Health” Initiative Supporting the Invent Health Initiative

Susannah Fox, CTO at the U.S. Department of Health and Human Services, talks about the many programs and initiatives within HHS; and inspiring entrepreneurs to focus on innovating within underserved communities. GUEST: Susannah Fox, HHS HOST: Unity Stoakes LOCATION: StartUp Health Village, New York, NY IN THIS EPISODE: The Role of CTO Within Government Inspiring Entrepreneurs to Serve Our Country Through Healthcare Innovation Invent Health

Many of us associate innovative solutions and scalable technology with startups, Silicon Valley, and scrappy teams; but these experts are focusing their time and talents in Washington DC in order to harness technology's ability to solve healthcare's biggest problems. Hear from The White House Chief Data Scientist DJ Patil, HHS CTO Susannah Fox and Fortune Magazine Senior Writer Leena Rao.

Susannah Fox returns to the podcast this week to talk about her work at the Robert Wood Johnson Foundation, sharing her son's food allergies with Stanford Medicine X, the rewarding challenge of engaging an audience on Medium, and a new exercise in empathy from people impacted by cystic fibrosis. Enjoy. Follow Susannah on Twitter @SusannahFox and susannahfox.com. Run Time - 1:02:19 Send your feedback to feedback@justtalkingpodcast.com.

http://www.einstein.yu.edu - Susannah Fox, associate director of digital strategy at the Pew Internet & American Life Project, explains why she believes online networks among and between patients, caregivers and physicians are the way of the future. This talk was given at Einstein and is part of faculty development associated with a Josiah Macy Jr. Foundation grant that Einstein was awarded in 2012 to promote online professionalism among faculty and students. See accompanying release: http://www.einstein.yu.edu/news/releases/830/einstein-faculty-receive-grant-to-teach-social-media-professionalism-in-medicine/

Susannah Fox, Associate Director at Pew Internet & American Life Project, is on the podcast this week. We spend the hour admiring data, the process of developing a study, the value of open data, and we take a glimpse at how deep the rabbit hole of research and analysis can go. Enjoy. Follow Susannah on Twitter at @SusannahFox. And you can keep up with Susannah's findings and musings at pewinternet.org and e-patients.net respectively. Run Time - 1:03:47 Send your feedback to feedback@justtalkingpodcast.com.