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Feb 9, 2025 • 47min

Emily Silverman: Storytelling, Uncertainty, and Humanity in Medicine

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
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Nov 2, 2024 • 43min

Rachael Bedard: A Geriatric Physician and Champion for Patients Without a Voice

Above is a brief video snippet from our conversation. Full videos of all Ground Truths podcasts can be seen on YouTube here. The audios are also available on Apple and Spotify.Transcript with links to audio and external citationsEric Topol (00:06):Well, hello it's Eric Topol with Ground Truths, and I'm really delighted to welcome Dr. Rachael Bedard, who is a physician geriatrician in New York City, and is actually much more multidimensional, if you will. She's a writer. We're going to go over some of her recent writings. She's actually quite prolific. She writes in the New Yorker, New York Magazine, New York Times, New York Review of Books. If it has New York in front of it, she's probably writing there. She's a teacher. She works on human rights, civil rights, criminal justice in the prison system. She's just done so much that makes her truly unique. That's why I really wanted a chance to meet her and talk with her today. So welcome, Rachael.Rachael Bedard (00:52):Thank you, Dr. Topol. It's an honor to be here.Eric Topol (00:55):Well, please call me Eric and it's such a joy to have a chance to get acquainted with you as a person who is into so many different things and doing all of them so well. So maybe we'd start off with, because you're the first geriatrician we've had on this podcast.Practicing Geriatrics and Internal MedicineEric Topol (01:16):And it’s especially apropos now. I wanted maybe to talk about your practice, how you got into geriatrics, and then we'll talk about the piece you had earlier this summer on aging.Rachael Bedard (01:32):Sure. I went into medicine to do social justice work and I was always on a funny interdisciplinary track. I got into the Mount Sinai School of Medicine through what was then called the Humanities and Medicine program, which was an early acceptance program for people who were humanities focused undergrads, but wanted to go into medicine. So I always was doing a mix of politics and activist focused work, humanities and writing, that was always interested in being a doctor. And then I did my residency at the Cambridge Health Alliance, which is a social medicine program in Cambridge, Massachusetts, and my chief residency there.(02:23):I loved being an internist, but I especially loved taking care of complex illness and I especially loved taking care of complex illness in situations where the decision making, there was no sort of algorithmic decision-making, where you were doing incredibly sort of complex patient-centered shared decision making around how to come up with treatment plans, what the goals of care were. I liked taking care of patients where the whole family system was sort of part of the care team and part of the patient constellation. I loved running family meetings. I was incredibly lucky when I was senior resident and chief resident. I was very close with Andy Billings, who was one of the founders of palliative care and in the field, but also very much started a program at MGH and he had come to work at Cambridge Hospital in his sort of semi-retirement and we got close and he was a very influential figure for me. So all of those things conspired to make me want to go back to New York to go to the Sinai has an integrated geriatrics and palliative care fellowship where you do both fellowships simultaneously. So I came to do that and just really loved that work and loved that medicine so much. There was a second part to your question.Eric Topol (03:52):Is that where you practice geriatrics now?Rachael Bedard (03:55):No, now I have ever since finishing fellowship had very unusual practice settings for a geriatrician. So right out of fellowship, I went to work on Rikers Island and then New York City jail system, and I was the first jail based geriatrician in the country, which is a sort of uncomfortable distinction because people don't really like to think about there being a substantial geriatric population in jails. But there is, and I was incredibly lucky when I was finishing fellowship, there was a lot of energy around jail healthcare in New York City and I wrote the guy who was then the CMO and said, do you think you have an aging problem? And he said, I'm not sure, but if you want to come find out, we'll make you a job to come find out. And so, that was an incredible opportunity for someone right out of fellowship.(04:55):It meant stepping off the sort of academic track. But I went and worked in jail for six years and took care of older folks and people with serious illness in jail and then left Rikers in 2022. And now I work in a safety net clinic in Brooklyn that takes care of homeless people or people who have serious sort of housing instability. And that is attached to Woodhull Hospital, which is one of the public hospitals in New York City. And there I do a mix of regular internal medicine primary care, but I preferentially see the older folks who come through, which is a really interesting, painful, complicated patient population because I see a fair amount of cognitive impairment in folks who are living in the shelter system. And that's a really hard problem to address.Frailty, The Aged, and LongevityEric Topol (05:54):Well, there's a theme across your medical efforts. It seems to me that you look after the neglected folks, the prisoners, the old folks, the homeless people. I mean that's kind of you. It's pretty impressive. And there's not enough of people like you in the medical field. Now, no less do you do that, but of course you are a very impressive author, writer, and of many topics I want to get into with you, these are some recent essays you've written. The one that piqued my interest to start to understand who you were and kind of discover this body of work was the one that you wrote related to aging and President Biden. And that was in New York Times. And I do want to put in a quote because as you know very well, there's so much interest in longevity now.Eric Topol (06:51):Interrupting the aging process, and this one really stuck with me from that op-ed, “Time marches forward, bodies decline, and the growing expectation that we might all live in perfect health until our 100th birthdays reflects a culture that overprizes longevity to the point of delusion.” So maybe if you could tell us, that was a rich piece, you got into frailty, you related it to the issues that were surrounding President Biden who at that time had not withdrawn from the race. But what were you thinking and what are your thoughts about the ability to change the aging process?Rachael Bedard (07:36):I am very interested in, I mean, I'm incredibly interested in the science of it. And so, I guess I think that there are a few things.(07:49):One thing is that the framework that, the part that gives me pause the most is this framework that anything less than perfect health is not a life worth living. So if you're going to have a long life, life should not just be long and sort of healthy in relative terms to your age cohort, but healthy that when you're 80 you should feel like you have the health of a 45-year-old is my understanding of the culture of longevity science. And while I understand why that's aspirational and everybody worry about my body's decline, I think it's a really problematic thing to say that sick bodies are bodies that have disability or people who have cognitive difference are somehow leading lesser lives or lives that are not meaningful or not worth living. I think it's a very, very slippery slope. It puts you in a place where it sort of comes up against another trend or another emerging cultural trend, which is really thinking a lot about physician-assisted suicide and end of life choices.(09:04):And that in some ways that conversation can also be very focused on this idea that there's just no way that it's worth living if you're sick. And that's just not true, I think, and that's not been true for many, many, many of my patients, some of whom have lived with enormous disability and incredible burden of illness, people who are chronically seriously ill and are still leading lives that for them and for the people who love them are filled with meaning. So that's my concern about the longevity stuff. I'm interested in the science around the longevity stuff for sure. I'm interested in, I think we're living in this really interesting moment where there's so much happening across so many of the chronic disease fields where the things that I think have been leading to body decay over the last several decades for the majority of the population, we're sort of seeing a lot of breakthroughs in multiple fronts all at once. And that's really exciting. I mean, that's really exciting. And so, certainly if it's possible to make it to 100 in wonderful health, that's what I'd wish for all of us. But to hold it up as the standard that we have to achieve, I think is both unrealistic and a little myopic.Eric Topol (10:28):Yeah. Well, I certainly agreed with that and I think that that particular essay resonated so well and you really got into frailty and the idea about how it can be potentially prevented or markedly delayed. And I think before we move on to one of those breakthroughs that you were alluding to, any comments about the inevitability of frailty in people who are older, who at some point start to get the dwindles, if you will, what do you have to say about that?Rachael Bedard (11:11):Well, from a clinical standpoint, I guess the caveat versus that not everybody becomes frail and dwindles exactly. Some people are in really strong health up until sort of their final years of life or year of life and then something happens, they dwindle quickly and that's how they die. Or some people die of acute events, but the vast majority of us are going to become more frail in our final decades than we are in our middle decades. And that is the normal sort of pattern of wear and tear on the body. And it is an extraordinary framework, I think frailty because the idea of this sort of syndrome of things where it's really not a disease framework, it is a syndrome framework and it's a framework that says many, many small injuries or stressors add up to create a lot of stress and change in a body and trauma for our body. And once you are sort of past a tipping point of an amount of stress, it's very hard to undo those things because you are not sort of addressing one pathologic process. You're addressing, you're trying to mitigate many processes all at once.(12:31):When I wrote that piece, it was inspired by the conversation surrounding President Biden's health. And I was particularly struck by, there was a huge amount of clinical speculation about what was going on with him, right? I'm sure you remember there were people, there was all of this talk about whether he had Parkinson's and what his cognitive status was. And it felt to me like there was an opportunity to do some public education around the idea that you need not have one single sort of smoking gun illness to explain decline. What happens to most of us is that we're going to decline in many small ways sort of simultaneously, and it's going to impact function when it tips over a little bit. And that pattern of decline is not going to be steady day over day worsening. It's going to be up and down. And if you slept better the night before, you might have a better day the next day. And if you slept badly, you might have a worse day. And without knowing anything specific about his clinical situation, it felt like a framework that could explain so much of what we were seeing in public. And it was important also, I think to say that nothing was necessarily being hidden from anybody and that this is the kind of thing that, this has accumulated stress over time that then presents suddenly all at once after having been submerged.Eric Topol (14:01):Yeah, you reviewed that so well about the wear and tear and everything related to that. And before I move on to the second topic, I want to just circle back to something you alluded to, which is when Peter Attia wrote about this medicine 3.0 and how you would be compressed and you'd have no comorbidities, you'd have no other illnesses and just fall off the cliff. As a geriatrician, do you think that that is even conceivable?Rachael Bedard (14:35):No. Do you think it is?Eric Topol (14:37):No, but I just wanted to check the reality. I did challenge on an earlier podcast and he came up with his pat answer. But no, there's no evidence of that, that maybe you can delay if there ever was a way to do that. But I think there's this kind of natural phenomena that you just described, and I'll refer people also to that excellent piece that you get into it more.Rachael Bedard (15:06):Peter Attia, I mean, he is certainly the sort of standard bearer in my mind of that movement and that science or that framework of thinking about science. And there's stuff in there that's really valuable. The idea of thinking about lifestyle in your middle decades is having meaningful impact on how you will age, what your final years will look like. That seems intuitively true, I think. And so, thinking about his emphasis on exercise, I mean, his emphasis on exercise is particularly intense and not super achievable for the average person, but the idea that you should sort of be thinking about keeping your body strong because it will decline eventually. And so, you want to do that from a higher peak. That makes a lot of sense to me. The idea that where we sort of draw pathologic disease cutoffs is obviously a little bit arbitrary. And so, wanting to think about optimizing pre-disease states and doing prevention, that's obviously, I think pretty appealing and interesting. It's just really in an evidence free zone.Ozempic for the IndigentEric Topol (16:18):Yeah, that's what I confronted him with, of course, he had a different perspective, but you summed that up really well. Now let's switch to a piece you had in New York magazine. It was entitled, What If Ozempic Is Just a Good Thing? And the reason, of course, this ties into the first thing we're discussing. There's even talk now, the whole GLP-1 family of drugs with the dual triple receptors, pills to come that we're going to be able to interrupt a path towards Alzheimer's and Parkinson's. Obviously you've already seen impact in heart disease, liver disease, kidney disease way before that, diabetes and obesity. So what are your thoughts? Because you wrote a very interesting, you provided a very interesting perspective when you wrote that one.Rachael Bedard (17:11):So that piece I wrote because I have this unbelievably privileged, interesting clinical practice. In New York City, there is public health insurance basically available to anybody here, including folks who are undocumented. And the public hospital system has pharmacies that are outpatient pharmacies that have, and New York Medicaid is very generous and they arranged through some kind of brilliant negotiating. I don't quite know how to make Ozempic to make semaglutide available to people who met criteria which meant diabetes plus obesity, but that we could prescribe it even for our very, very poor patients and that they would be able to get it reliably, that we would have it in stock. And I don't know how many other practices in the country are able to reliably provide GLP-1s to marginalized folks like that. I think it feels like a really rare opportunity and a very distinct perspective.(18:23):And it has just been the most amazing thing, I think to have this class of drugs come along that, as you say, addresses so many problems all at once with at least in my prescribing experience, a relatively mild tolerable side effect profile. I have not had patients who have become incredibly sick with it. And for folks where making that kind of impact on their chronic illness is so critical to not just their longevity, but their disease status interacts so much with their social burden. And so, it's a very meaningful intervention I think around poverty actually.(19:17):I really feel that almost all of the popular press about it has focused very much on use amongst the wealthy and who's getting it off label and how are they getting it and which celebrities are taking it, and what are the implications for eating and diet culture and for people who have eating disorders. And that's a set of questions that's obviously sort of interesting, but it's really interesting in a very rarefied space. There's an unbelievable diabetes epidemic in this country, and the majority of people who have diabetes are not the people who are getting written about over and over again in those pieces. It's the patients that I take care of, and those people are at risk of ending up on dialysis or getting amputations. And so, having a tool this effective is really miraculous feeling to me.Eric Topol (20:10):Well, it really gives me some hope because I don't know any program like that one, which is the people who need it the most. It's getting provided for them. And we have been talking about a drug that costs a thousand dollars a month. It may get down to $500 a month, but that's still a huge cost. And of course, there's not much governmental coverage at this point. There might be some more for Medicare, Medicaid, whatever in the future, but it's really the original criteria of diabetes, and it took almost 20 years to get to where we are right now. So what's so refreshing here is to know that there's at least one program that is helping to bridge the inequities and to not make it as was projected, which was, as you say, for celebrities and wealthy people more exclusively, so that's great. And we still don't know about the diverse breadth of these effects, but as you well know, there's trials in Alzheimer's. I spoke to Steve Horvath recently on the podcast and he talked about how it's reset the epigenetic clock, GLP-1.Rachael Bedard (21:24):Does he think so?Eric Topol (21:26):Whoa. Yeah, there was evidence that was just presented about that. I said, well, if that does correspond to aging, the thing that we spoke about first, that would be very exciting.Rachael Bedard (21:37):It’s so wild. I mean, it's so exciting. It's so exciting to me on so many levels. And one of them is it's just exploding my mental model of disease pathogenesis, and it's making me think, oh my goodness, I have zero idea actually how metabolism and the brain and sort of cardiovascular disease, all of those things are obviously, what is happening in the interplay between all of those different systems. It's really so much more complicated and so much more interdependent than I understood it to be. I am really optimistic about the Alzheimer's trial. I am excited for those results, and I think we're going to keep seeing that it prevents different types of tumors.Eric Topol (22:33):Yeah, no, and that's been shown at least certainly in obese people, that there’s cancers that gets way reduced, but we never had a potent anti-inflammatory that works at the brain and systemically like this before anyone loses the weight, you already see evidence.Long Covid and ME/CFS(22:50):It is pretty striking. Now, this goes back to the theme that was introduced earlier about looking after people who are neglected, who aren't respected or generally cared for. And I wanted to now get into Long Covid and the piece you wrote in the New Yorker about listening to patients, called “what would it mean for scientists to listen to patients?” And maybe you can talk about myalgic encephalitis/chronic fatigue (ME/CFS), and of course Long Covid because that's the one that is so pervasive right now as to the fact that these people don't get respect from physicians. They don't want to listen to their ailments. There's no blood tests, so there's no way to objectively make a diagnosis supposedly. And they're basically often dismissed, or their suffering is discounted. Maybe you can tell us again what you wrote about earlier this year and any updated thoughts.Rachael Bedard (24:01):Have you had my friend Harlan Krumholz on the show to talk about the LISTEN study?Eric Topol (24:04):Not yet. I know Harlan very well. Yes.Eric Topol (24:11):I know Akiko Iwasaki very well too. They’re very, very close.Rachael Bedard (24:14):So, Akiko Iwasaki and Harlan Krumholz at Yale have been running this research effort called the LISTEN study. And I first learned about it sometime in maybe late 2021. And I had been really interested in the emerging discourse around chronic illness in Long Covid in the 2021. So when we were past the most acute phase of the pandemic, and we were seeing this long tail of sequelae in patients, and the conversation had really shifted to one that was about sort of trying to define this new syndrome, trying to understand it, trying to figure out how you could diagnose it, what were we seeing sort of emerge, how are we going to draw boxes around it? And I was so interested in the way that this syndrome was really patient created. It came out of patients identifying their own symptoms and then banning together much, much faster than any kind of institutional science can ever work, getting into message boards together or whatever, and doing their own survey work and then coming up with their own descriptive techniques about what they were experiencing.(25:44):And then beyond that, looking into the literature and thinking about the treatments that they wanted to try for themselves. Patients were sort of at the forefront of every step of recognizing, defining, describing this illness presentation and then thinking about what they wanted to be able to do for themselves to address it. And that was really interesting to me. That was incredibly interesting to me. And it was also really interesting because by, I don't know exactly when 2021 or 2022, it was already a really tense landscape where it felt like there were real factions of folks who were in conflict about what was real and what wasn't real, how things ought to be studied, who ought to be studying them, what would count as evidence in this realm. And all of those questions were just really interesting to me. And the LISTEN study was approaching them in this really thoughtful way, which was Harlan and Akiko sort of partnering really closely with patients who enrolled.(26:57):And it's a decentralized study and people could enroll from all over the world. There's a portion of patients who do have their blood work evaluated, but you can also just complete surveys and have that data count towards, and those folks would be from anywhere in the world. Harlan did this amazing, amazing work to figure out how to collect blood samples from all over the country that would be drawn at home for people. So they were doing this decentralized study where people from their homes, from within the sort of circumstances of their lives around their chronic illness could participate, which that was really amazing to me. And then they were partnering really thoughtfully with these patients just to figure out what questions they wanted to ask, how they wanted to ask them, and to try to capture a lot of multimodal data all at once.(27:47):Survey data, journaling so people could write about their own experience in a freeform journal. They were collecting blood samples, and they were holding these town halls. And the town halls were on a regular basis, Harlan and Akiko, and anybody who was in the study could come on, could log onto a Zoom or whatever, and Harlan and Akiko and their research staff would talk about how things were going, what they were working on, what questions they had, what the roadblocks were, and then they would answer questions from their participants as the study was ongoing. And I didn't think that I had ever heard of something quite like that before. Have you ever heard of anything?Eric Topol (28:32):No. I mean, I think this is important to underscore, this was the first condition that was ever patient led, patient named, and basically the whole path was laid by the patient. So yes, and everything you summarize is so well as to the progress that's been made. Certainly, Harlan and Akiko are some of the people that have really helped lead the way to do this properly as opposed to, unfortunately one and a half billion dollars that have been put to the NIH for the RECOVER efforts that haven't yet led to even a significant clinical trial, no less a validated treatment. But I did think it was great that you spotlighted that just because again, it's thematic. And that gets me to the fourth dimension, which is you're the first prison doctor I've ever spoken to. And you also wrote a piece about that called, “the disillusionment of a Rikers Island Doctor” in the New Yorker, I think it was. And I wonder if you could tell us, firstly, now we're four years into Covid, you were for a good part of that at Rikers Island, I guess.The Rikers Island Prison Doctor During CovidRachael Bedard (30:00):I was, yeah.Eric Topol (30:00):Yeah. And what could be a more worrisome spot to be looking after people with Covid in a prison? So maybe you could just give us some insight about all that.Rachael Bedard (30:17):Yeah, it was really, I mean, it was the wildest time, certainly in my career probably that I'll ever have. In the end of February and beginning of March of 2020, it became very apparent to my colleagues and I that it was inevitable that this virus that was in Wuhan and in Italy was coming to the US. And jails are, we sort of jokingly described them as the worst cruise ships in the world. They are closed systems where everybody is eating, sleeping, going to the bathroom, everything on top of each other. There's an incredible amount of excess human contact in jails and prisons because people don't have freedom of movement and they don't get to do things for themselves. So every single, somebody brings you your mail, somebody brings you your meals, somebody brings you your medications. If you're going to move from point A to point B, an officer has to walk you there. So for a virus that was going to spread through what we initially thought was droplets and then found out was not just droplets but airborne, it was an unbelievably high-risk setting. It's also a setting where folks tend to be sicker than average for their age, that people bring in a lot of comorbidity to the setting.(31:55):And it's not a setting that does well under stress. I mean, jails and prisons are places that are sort of constitutionally violent, and they're not systems that adapt easily to emergency conditions. And the way that they do adapt tends to be through repressive measures, which tends to be violence producing rather than violence quelling. And so, it was just an incredibly scary situation. And in mid-March, Rikers Island, the island itself had the highest Covid prevalence of anywhere in the country because New York City was the epicenter, and Rikers was really the epicenter within New York. It was a wild, wild time. Our first seriously ill patient who ended up getting hospitalized. That was at that time when people were, we really didn't understand very much about what Covid looked like. And there was this guy sitting on the floor and he said, I don't know. I can't really get up.(32:59):I don't feel well. And he had an O2 stat of 75 or something. He was just incredibly hypoxic. It's a very scary setting for that kind of thing, right? It's not a hospital, it's not a place where you can't deliver ICU level care in a place like that. So we were also really worried about the fact that we were going to be transferring all of these patients to the city hospitals, which creates a huge amount of extra burden on them because an incarcerated patient is not just the incarcerated patients, the officers who are with that person, and there are special rules around them. They have to be in special rooms and all of these things. So it was just a huge systems crisis and really painful. And we, early on, our system made a bunch of good guesses, and one of our good guesses was that we should just, or one of our good calls that I entirely credit my bosses with is that they understood that we should advocate really hard to get as many people out as we could get out. Because trying to just manage the population internally by moving people around was not going to be effective enough, that we really need to decant the setting.(34:18):And I had done all of this work, this compassionate release work, which is work to get people who are sick out of jail so that they can get treatment and potentially die in a free setting. And so, I was sort of involved in trying to architect getting folks who were sort of low enough security risks out of jail for this period of time because we thought that they would be safer, and 1500 people left Rikers in the matter of about six weeks.Rachael Bedard (34:50):Which was a wild, wild thing. And it was just a very crazy time.Eric Topol (34:56):Yeah. Well, the word compassion and you go together exceptionally well. I think if we learn about you through your writings, that really shines through and what you've devoted your care for people in these different domains. This is just a sampling of your writings, but I think it gives a good cross section. What makes you write about a particular thing? I mean, obviously the Rikers Island, you had personal experience, but why would you pick Ozempic or why would you pick other things? What stimulates you to go after a topic?Rachael Bedard (35:42):Sometimes a lot of what I write about relates to my personal practice experience in some way, either to geriatrics or death and dying or to the criminal justice system. I've written about people in death row. I've written about geriatrics and palliative care in sort of a bunch of different ways. I am interested in topics in medicine where things are not yet settled, and it feels very of the moment. I'm interested in what the discourse is around medicine and healthcare. And I am interested in places where I think the discourse, not just that I'm taking a side in that discourse, but where I think the framework of the discourse is a little bit wrong. And I certainly feel that way about the Ozempic discourse. And I felt that way about the discourse around President Biden, that we're having not just a conversation that I have a strong opinion about, but a conversation that I think is a little bit askew from the way that we ought to be thinking about it.Eric Topol (36:53):And what I love about each of these is that you bring all that in. You have many different points of view and objective support and they're balanced. They're not just trying to be persuasive about one thing. So, as far as I know, you're extraordinarily unique. I mean, we are all unique, but you are huge standard deviations, Rachael. You cover bases that are, as I mentioned, that are new to me in terms of certainly this podcast just going on for now a couple of years, that is covering a field of both geriatrics and having been on the corrections board and in prison, particularly at the most scary time ever to be working in prison as a physician. And I guess the other thing about you is this drive, this humanitarian theme. I take it you came from Canada.Rachael Bedard (37:59):I did.Eric Topol (37:59):You migrated to a country that has no universal health.Rachael Bedard (38:03):That's right.Eric Topol (38:03):Do you ever think about the fact that this is a pretty pathetic situation here?Rachael Bedard (38:08):I do. I do think about it all the time.Eric Topol (38:10):In our lifetime, we'll probably never see universal healthcare. And then if you just go a few miles up north, you pretty much have that.Rachael Bedard (38:18):Yeah, if you've lived in a place that has universal healthcare and you come here, it's really sort of hard to ever get your mind around. And it has been an absolute possessing obsession of my entire experience in the US. I've now been here for over 20 years and still think it is an unbelievably, especially I think if you work with marginalized patients and how much their lack of access compounds the difficulty of their lives and their inability to sort of stabilize and feel well and take care of themselves, it's really frustrating.Advice for Bringing Humanities to Medicine in a CareerEric Topol (39:14):Yeah, yeah. Well, I guess my last question to you, is you have weaved together a career that brings humanities to medicine, that doesn't happen that often. What's your advice to some of the younger folks in healthcare as to how to pull that off? Because you were able to do it and it's not easy.Rachael Bedard (39:39):My main advice when people ask me about this, especially to students and to residents who are often the people who are asking is to write when you can or pursue your humanities interests, your critical interests, whatever it is that you're doing. Do it when you can, but trust that your career is long and that you have a lot of time. Because the thing that I would say is I didn't start publishing until I was in fellowship and before that I was busy because I was learning to become a doctor. And I think it's really important that my concern about being a doctor who's a hybrid, which so many of us are now. A doctor or something else is you really do want to be a good doctor. And becoming a good doctor is really hard. And it's okay if the thing that is preoccupying you for the first 10 years of your training is becoming a great clinician. I think that's a really, really important thing to do. And so, for my first 10 years for med school and residency and chief residency and fellowship, I would write privately on the side a fair amount, but not try to publish it, not polish that work, not be thinking in sort of a careerist way about how I was going to become a doctor writer because I was becoming a doctor. And that was really preoccupying.(41:08):And then later on, I both sort of had more time and mental space to work on writing. But also, I had the maturity, I think, of being a person who was comfortable in my clinical identity to have real ideas and insights about medicine that felt different and unique to me as opposed to, I barely understand what's going on around me and I'm trying to pull it together. And that's how I would've been if I had done it more, I think when I was younger. Some people are real prodigies and can do it right out the gate, but I wasn't like that.Eric Topol (41:42):No, no, I think that's really sound advice because that's kind of the whole foundation for everything else. Is there a book in the works or will there be one someday?Rachael Bedard (41:53):There may be one someday. There is not one now. I think about it all the time. And that same advice applies, which is I believe in being a late bloomer and taking your time and figuring out what it is you really want to do.Eric Topol (42:10):Yeah. Well, that's great. Have I missed anything? And obviously we only can get to know you in what, 40 minutes to some extent, but have I not touched on something that you want to bring up?Rachael Bedard (42:23):No, I don't think so. Thank you for this conversation. It's been lovely.Eric Topol (42:28):No, I really enjoyed it. I'll be following your career. It's extraordinary already and you've got decades ahead to make an impact and obviously thinking of all these patients that you look after and have in the past, it’s just extraordinary. So what a joy to talk with you, Rachael, and I hope we'll have a chance to do that again in the times ahead.Rachael Bedard (42:51):Me as well. Thank you so much for inviting me.**********************************************Thank you for listening, reading or watching!The Ground Truths newsletters and podcasts are all free, open-access, without ads.Please share this post/podcast with your friends and network if you found it informative!Voluntary paid subscriptions all go to support Scripps Research. Many thanks for that—they greatly help fund our education and summer internship programs.Thanks to my producer Jessica Nguyen and Sinjun Balabanoff for audio and video support at Scripps Research.Note: you can select preferences to receive emails about newsletters, podcasts, or all I don’t want to bother you with an email for content that you’re not interested in. Get full access to Ground Truths at erictopol.substack.com/subscribe
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Oct 19, 2024 • 36min

Katerina Akassoglou: Blood Clots, Brain Inflammation, and Covid

Katerina Akassoglou, a leading neuroimmunologist at the Gladstone Institutes, dives into the intricate relationship between blood, brain health, and inflammation, particularly in the context of COVID-19. She discusses groundbreaking research linking the SARS-CoV-2 spike protein to fibrin and its inflammatory impact on the brain. The conversation highlights the nuances of neuroinflammation in long COVID and explores potential therapeutic strategies. Akassoglou also emphasizes the importance of collaboration in tackling these complex health issues and the role of foundational research in vaccine development.
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Oct 13, 2024 • 47min

Patrick Hsu: A Trailblazer in Digital Biology

Patrick Hsu, a visionary in genome editing and AI, co-founded the Arc Institute where biomedical science meets machine learning. He shares insights on the revolutionary bridge RNAs that could redefine genome editing, likening it to CRISPR 3.0. Hsu discusses the role of AI as an autonomous assistant in research, and how it fosters creativity in labs. He emphasizes the importance of interdisciplinary collaboration to overcome challenges in computational biology, all while exploring the exciting potential of merging AI with life sciences.
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Sep 24, 2024 • 39min

AI Snake Oil—A New Book by 2 Princeton University Computer Scientists

Arvind Narayanan and Sayash Kapoor, esteemed computer scientists from Princeton, dive deep into their book 'AI Snake Oil.' They challenge the hype around predictive AI by discussing its failures, particularly in healthcare. The conversation highlights a case where an algorithm discriminated against Black patients. They also explore the balance between predictive and generative AI, stressing the need for skepticism in its applications. Plus, they touch on the complexities of AI in content moderation and the significance of human oversight.

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