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Emily Silverman  

You're listening to The Nocturnist: Conversations. I'm Emily Silverman. What would you do if the medical system couldn't provide the answers you needed, or worse, the answers your child needed? Would you wait and hope for a solution, or would you take matters into your own hands? Across the world, patients and caregivers are stepping into the role of innovators, hacking into their own medical devices, inventing new solutions and building communities to solve problems that traditional healthcare can't, or won't. This quiet revolution is reshaping medicine, and at its heart is the belief that patients are not just passive consumers of care; they're leaders, inventors, entrepreneurs, connectors. Today, we're diving into this movement with Susannah Fox, the author of the book "Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care". Susannah is a health and technology strategist and former Chief Technology Officer for the US 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. Susannah has also spent decades uncovering stories of talented and motivated patients who didn't wait around for scientists, doctors, researchers or business to solve their problems, and instead solved their problems themselves. I really enjoyed this conversation with her, in which we discussed the type one diabetes patients who liberated their own data from their continuous glucose monitors and invented a closed-loop artificial pancreas; the multiple myeloma patients who advocated for a research study about dexamethasone that doctors and scientists thought was kind of boring, but actually ended up shaking up the standard treatment protocol; the spontaneous invention of a button called condition H, which a patient, rather than a doctor or nurse, could press to effectively call a rapid response if they felt like something was wrong with their loved one; online disease communities; pay walls for taxpayer funded medical research, and the way that Susannah incentivized innovation with competition and prizes from her role inside the White House. This was a very exciting conversation and a very humbling conversation, and I hope you enjoy it as much as I did, but first, take a listen to Susannah reading from her book Rebel Health.

Susannah Fox  

The first time I faced a health crisis in my family, I failed. I had been tracking the patient led revolution for a few years, gathering evidence of how useful it is for patients, survivors and caregivers, to seek answers, pool resources and solve problems together, but I did not think that I needed to tap into that vein of wisdom and innovation for myself. Maybe you are like me. You think you've got it all together in terms of your health. When you have a question, you Google it and the information you need generally pops up. If you're lucky, you already have a doctor you trust and friends who pitch in with practical advice and emotional support. It's easy to assume you have the best available knowledge. I did.  When my younger child was diagnosed with life-threatening food allergies, I thought we could handle it on our own as a family. I read a few articles online, I bought a couple of books, I found an allergist. I thought I had it all together. I was wrong. I didn't know that one of the world's foremost experts in food allergy practiced just an hour away and was taking new patients. I didn't know that the local clinical practice we had chosen was using outdated testing practices.I didn't know that we had to change how we shopped, stored and cooked food, both at home and when traveling. I didn't know that there are restaurants that cater to people with food allergies. I didn't know any of the local or federal regulations around carrying epinephrine, which can stop a reaction if used immediately. Heck, I didn't even fill the prescription for an epinephrine auto injector until after our second trip to the emergency room. My confident Google searches brought none of those revelations.  No, the epiphany came offline when my husband's colleague, Julia Gordon, invited us to join her online community of Washington, DC area food-allergy families. I had assumed that support groups were for other more desperate people, not me. I did not think I had anything to learn from fellow parents. Tapping into peer knowledge meant we were able to ask for more precise tests, get into a clinical trial, and cut in half the list of foods to avoid. It also taught me how to be a networker. Thanks to the lessons learned from my experience as a food-allergy advocate, I could be a more effective caregiver for other people in my life.

Emily Silverman  

I am here with Susannah Fox. Susannah, thank you for coming on the show. 

Susannah Fox  

It's a pleasure. 

Emily Silverman  

So Susannah, in this book, you document patient-led advances in care, many of these patients operating on the margins of the mainstream medical system. This can be anything from inventing hardware, medical devices, tinkering in their home, inventing software algorithms; it could be something like building support groups or communities. It's everything. It's hard skills, it's soft skills, it's people, it's technology, and I had such a blast just tearing through this book and hearing all of the stories and anecdotes that you put together from,what you write is, more than twenty years of interviews and surveys of patients, survivors, caregivers. Tell us how you came to this work. Was it related to the personal family issue that you just read about? Or did you get interested some other way, and how did this all get started for you?

Susannah Fox  

I was lucky enough to jump through the window of opportunity that the internet presented in my twenties. I learned how to build websites, and I got to work with a lot of the pioneers of that early web, and I saw, and frankly, fell in love with the democratization of access to information and data that I saw back in the 90's, when dinosaurs roam the internet. And when I switched gears and became a researcher, my assignment was to look for areas of American society that were being deeply changed by technology, and that first year, I looked at banking, I looked at privacy and security, and I looked at healthcare, and I fell in love with healthcare. This amazing opportunity for people to have access to the information that had been previously locked up and kept out of reach, and crucially, the opportunity for people to have access to each other. My mentor, Tom Ferguson, gave me the advice to not stay in my office and ask people questions from on high, but to actually get out into communities and learn about how people were using technology to pursue health.

Emily Silverman  

And you talked about how you got into this through the internet and technology, but the idea of patient driven movements in health is not new. There are many examples across history of this happening. You mentioned in the book AA, Alcoholics Anonymous, you mentioned La Leche League with breastfeeding. Obviously, the ACT UP movement with HIV was huge and incredibly influential. Tell us about these pre-internet movements and how they lay the groundwork for some of the things that are happening now.

Susannah Fox  

Something that I noticed in my field work is that when someone falls off the conveyor belt of mainstream healthcare, they have a couple of choices. They could lie there on the floor and give up, or they could stand up and try to find a way out, and if they are able to gather together with other people who feel invisible or are being ignored, if their issues are not being addressed by mainstream healthcare, then they gather together to try to navigate toward health. And in the age of the internet, we see people doing that online, but this is human behavior that has been going on since the dawn of time, i'm quite sure. I decided to put in my book a timeline that was essentially the 20th century. I found examples of what I call peer to peer healthcare, this idea of people connecting to try to solve a problem together. I found an example in every decade, starting in the 1930s with Alcoholics Anonymous, on through the 1990s with ACT UP. And what was amazing to see, once I started looking, there were echoes of what I'm seeing today, even back then. People who were being ignored because what they were living with was stigmatized, like alcohol use disorder or because of racism. The Black Panther Party saw that no one was tracking sickle cell anemia, and so they began a community-led data registry in the 1970s. We are seeing that kind of work happening today in communities that are outside the mainstream. They know that they have a problem that needs to be solved, and so they are collecting data to solve it.

Emily Silverman  

There's so many great examples of how this is happening in the internet age and forward, and I want to start with some of these examples around hardware. So I was reading your book and noticing a pattern. So one of the stories that you told was about somebody with Parkinson's disease posting online this problem, which was that the Parkinson's pills were too small and they kept falling and it was difficult to handle them, especially with the tremor of Parkinson's. There was another person, similarly, who had diabetes and required a blood glucose monitor and the alarm that was supposed to go off in the middle of the night to wake them up if their blood glucose was too low, was not loud enough. They were a really deep sleeper, and they were terrified that the alarm would go off, they wouldn't hear it, and then they would die in their sleep. And in both of these examples, these patients attempted to contact the powers that be, I guess you could say. They went to the blood glucose monitor company and say, "Hey, have you thought about an alarm that's louder?", and in the case of the Parkinson's pills, I think there was even an attempt to ask the pharmaceutical company like, "Hey, what do you think about a bigger pill?" And you would think that these companies would respond and say, "Oh, my god, what a great insight from one of our end users. Let's respond and give the people what they want." But no, that's not what happened. In both cases, they were dismissed, ignored and told to go away and shut up. Explain why that happens and how you think about that.

Susannah Fox  

There are many broken places in our healthcare system, and one of those that has been identified by the patient led revolution is that there is no intake valve at most medical device companies and pharmaceutical companies for patient input, and that is because, historically, these companies have not really seen patients as their customers. They see the prescribing clinician as their customer, and so they didn't have a way to hear what these patients were trying to tell them, and so they missed out on these wonderful product improvement ideas. And by the way, these are ideas that would make the product safer and more effective.

Emily Silverman  

You wrote in the book, if someone's questions are not visible and interesting to scientists, then doctors are not likely to have any treatments to offer. So in your mind, is it a simple issue of distortions in the market? Like you said, the client or the customer isn't the patient, it's the doctor or it's the pharmacy benefit manager or whoever is deciding how these materials are getting shuttled through an extremely complicated web of businesses where the incentives are all out of whack. Is there a movement to shift that? So that companies are actually designing things for patients, for end users, or are we just too stuck in that web of distorted incentives that people are going to continue to have to operate on the margins, and these big companies aren't really going to want to hear what patients have to say?

Susannah Fox  

Sometimes I think about that question and it feels too big to think about all the ways that our systems feel rigged against us. And then I think about the work of one patient group, or even sometimes one caregiver or patient who raises their hand and says, I have an idea. And when we think about why a pharmaceutical company, for example, is not focusing on a certain condition or disease, it might be because the market is too small. That's certainly true in rare disease. And therefore it's often up to a rare disease community to begin the work and again, create a community-led data registry to prove that there is a market for this, that, hey if you can actually keep our kids alive, then they will be a worthy market for investment, just to put it in frankly capitalistic terms. There are other times that people at government agencies and in companies are just trying to execute against their current agenda. It's not their job to innovate; it's their job to deliver this product. It's their job to deliver that service, and they don't have time to think about necessarily, how to make it better. And I saw, that in my own service at the US Department of Health and Human Services, that it was often really easy to get someone at the top to pay attention to innovation, because frankly, it's their job to be visionary, and it was often easy to get the attention of a front line healthcare worker because they're close to the patient. They're at the bedside. What's really, really tough is to get the attention of the people who control the budget or the people who are more in control of the workforce. And one reason I wrote my book was to give people language to describe the value of what outside innovators can bring to these conversations that actually really would have to do with the bottom line and with the delivery of care.

Emily Silverman  

And for the audience, just echoing that, if you take a look at this book, there are stories and recounting of different incidents and episodes that have occurred over time, but there is also a lot of really practical strategic advice with little boxes with tips, on just like you said, language to use, who to direct your efforts toward, and things like that. So in a way, this book serves as a handbook for people or patients who are trying to have their concerns heard. So back to the Parkinson's pills and the blood glucose monitor. For the Parkinson's pills, we ended up seeing some innovation online, where somebody saw something on social media, and then they 3D printed a new pill dispenser, or something like that, you can correct me if I'm wrong, but really just grassroots invention. The diabetes story is much more rich, the whole blood glucose monitor algorithms, artificial pancreas, and there have been many different groups that have worked toward improving that technology you mentioned in the book, Open APS, NightScout, Bigfoot BioMedical, I know probably a whole book could be written about that. But can you give us a taste of that community and the diabetes DIY community and some of these swashbuckling stories of people just hacking into their own devices and innovating on their own?

Susannah Fox  

I love, by the way, that you picked out these two hardware stories, of the Parkinson's pill challenge and the diabetes device challenge, because that is the two sides of hardware innovation. One is something just a quick note on the Parkinson's pill issue. It turns out that there are many, many people who struggle with tiny pills and a tremor or low dexterity. And so this is something that once you start looking you see many, many people who are struggling with different pill cases and different ways to manage their medications. So that's a market opportunity that we now see thanks to patients and caregivers really demanding to be heard on social media. As for the diabetes Rebel Alliance, I really think of them as the full stack of what I'm talking about. They are people who are deeply dissatisfied with the status quo. It is life or death for them, and those who go out on the hunt for solutions, work with those who network together and create community. I'll tell a story about Dana Lewis, who was the young woman that you were describing, who was a very deep sleeper, and she wrote to the device company, and that device company missed the opportunity to hear from Dana and make that continuous glucose monitors alarm louder. But happily, she's part of an online community of people who were sharing ideas about how to improve these devices, and she saw a message from an engineer dad named John Costik who realized that he could free the data from his son's CGM and send it to his Apple Watch so that when he set an alarm in the middle of the night to go check on his kid, he didn't have to stumble down the hallway to look at the screen of the monitor. He could just roll over look at his own Apple Watch and see that his son was in range and go back to sleep. Huge improvement. And if you don't live as a parent of a child with type one that might not be visible to you, but it's very visible and very painful to everyone who's in that situation.  And so by essentially being able to jail-break the CGM John Costik set off a cascade of innovation for diabetes devices, because once the data was free from that device, it could flow to where it needed to go to a parent's Apple Watch, to be able, for example, to let that child go on a sleepover at grandma's house. Whereas in the past, you wouldn't have trusted grandma, necessarily, to make sure that the child was doing okay in the middle of the night. And it led, as you say, to Dana Lewis, Ben West and Scott librand, working together to create the world's first 'Do It Yourself' artificial pancreas. Because they again, were able to take apart an insulin pump, figure out the protocols-

Emily Silverman  

Like, literally take it apart. 

Susannah Fox  

Like literally take it apart! Well, that's what you have to do to really understand a device. And Ben West had done that work because he was, again, someone who was an engineer who is bringing the expertise from his life into his expertise as a patient living with diabetes. What's really important is that they did all of this amazing, swashbuckling DIY diabetes device work in consultation with their clinicians. They knew that they were already in pretty good control of their diabetes because they were already doing all the math. And so instead of having to do this math themselves, they were able to essentially set up a machine using a Raspberry Pi, a microprocessor. They were able to loop together the continuous glucose monitor with the insulin pump. And it's a revolution that has pushed the diabetes device field forward, and what I hope is a sentinel example, because, by the way, there are many medical devices that the data is still locked up inside that device, and patients don't have access to the data that's being generated by their own bodies. 

Emily Silverman  

One of the groups you talk about is Bigfoot Biomedical. Talk about that word Bigfoot. Where did that come from? Because I think that's kind of telling.

Susannah Fox  

Brian Mazlish was a dad like John Costik who had a kid with type one diabetes, and they were lucky enough to have a continuous glucose monitor. And Brian's wife, Sarah, is a clinician, and she also lives with type one. He was a very early hacker into diabetes devices, but the first part of his career was in a very regulated industry of finance, and so he decided not to share what he had created openly online. He took it to researchers and took it to the FDA, all of whom said, "Shut this down. You should not be doing this." So he didn't share it with other patients, but he did create a monitoring device and a DIY artificial pancreas system at home, just for their little family and other people heard rumors about what Brian had done, and "Wired" magazine called him the "Bigfoot of diabetes", someone who is rumored but nobody has ever met. And what I love about that story is that eventually Brian did start a company, and they couldn't resist calling it Bigfoot Biomedical because it's a great name, and it's an example of how innovation can happen at home, at the kitchen table. And because this is a highly regulated industry, people could keep their innovation close to the vest and want to get a patent on it, and that is definitely one way to pursue innovation and go through the regular channels, whereas the diabetes Rebel Alliance was more likely to share openly, so that hundreds and then thousands of people benefited right away from the innovations that Dana Lewis, Jon, costik, Ben West and others created.

Emily Silverman  

Were the big device manufacturing companies working on a closed loop algorithm for an artificial pancreas, and it was just that the patients were so invested that they cracked it sooner, or was there a sluggishness inside the device companies like they weren't even really trying to do it, and then the patients did it? Because you would think that the companies would want that too. 

Susannah Fox  

The companies absolutely want it and this dream of an artificial pancreas system is something that medical device companies have been working on. And again, I have empathy for people who are working in highly regulated spaces. They don't have the freedom to do these experiments. I remember talking with a dad of a child with rare disease, and that dad said "In my house, I am the FDA," and that is true, that within your own household, you can make decisions for yourself and for your family members, that a medical device company cannot make. They have to wait and do all of the testing and make sure that it's perfect before it can be launched into the market. And the battle cry of the diabetes rebels is "We are not waiting." What they say is we are not waiting for industry to innovate. We are not waiting for the government to save us. We are not waiting for clinicians and scientists to come up with a cure. Our kids, and we are suffering now, and we are going to create a way out of no way.

Emily Silverman  

Just got a little chill when you said that. So we've talked about devices a bit, and I want to move toward other types of patient led innovations, because there are so many amazing stories here. Tell us the story of a physician named Don Berwick, who is the CEO of the Institute for Healthcare Improvement, inviting a person named Sorrel King to Baltimore in 2001, and there was something that transpired on stage in front of a crowd that became kind of legendary. Tell us what happened.

Susannah Fox  

Don Berwick is a great example of a champion for patients and survivors and caregivers having access to the data and information they need to take care of themselves. And he knew that we needed to create radical change in the healthcare system for safety. Sorrel King herself was a mom of four whose youngest child, Josie, at two years old, had been accidentally burned at home by very hot water, and through a medical error, had died she'd been given the wrong amount of medication, a classic never event, and instead of suing the hospital, the King family started the Josie King foundation and Josie's memory, to advocate for families being able to stop something that was hurting their family. Don Berwick invited Sorrel King up on stage when he was announcing a safety initiative that would allow, instead of only doctors being able to call in an emergency team, nurses would be able to call in that emergency team. And when he handed the mic to Sorrel King, she said, "why couldn't families call in the emergency team?" And at first there was silence in the room, because she said, "I believe that if I had been able to call in the team. I wouldn't be standing here today. I would be home with my daughter, Josie." And the crowd rose to its feet and applauded, and they changed the program, and they created condition H, which makes it easy for a family member to say, "My loved one is not getting the treatments they need. I'm not an expert in medicine, but I'm an expert in my loved one. And we need to stop and we need to recheck what's going on here."

Emily Silverman  

Yeah, this was one of my favorite parts of the book, where you say, "When the microphone was passed to King, she asked, do you think a patient or family member could push the button? Could they call the rapid response team to the bedside if no one was listening to them and they were scared out of their minds. The audience began to applaud, some of them rising to give King a standing ovation. She went on saying, I believe, with all of my heart that if I had been able to call a rapid response team, my daughter Josie would not have died. She would be six years old, and I wouldn't be standing here today. She handed the microphone to Berwick, to sudden and complete silence," and they made it. Condition H was made. Is it pretty prevalent? Because I will say, I've worked in a couple hospitals and I haven't seen it, and so I'm curious, how much did condition H take across the country?

Susannah Fox  

It started in the Pittsburgh area, and it has rolled out nationwide. And I tell a story in the book about how someone that I am connected to through social media was able to trigger and use Condition H down in Alabama when her mother was dying before her eyes, because she was being given the wrong medications. And I was surprised to hear the story, because it turns out she had read about Condition H on my blog, and then it caught her eye while she was sitting at her mother's bedside, worried about how she was going to get someone's attention. She happened to see a placard hanging on the door for Condition H. And the more that we can empower caregivers to be able to trigger that kind of rapid response, the better.

Emily Silverman  

There were a couple of other stories in this book that I think highlighted to me the blind spots that the medical community has. You talked about the father not wanting to get up out of bed, go to their kid's room, check the device; how much easier it is just to roll over in bed and check your Apple Watch. That's not a problem that the medical community would necessarily pick up on, because they're not living it. And there were a couple of other examples. So one of them was an information kiosk for patients newly diagnosed with migraine, and they contacted a doctor, maybe it was a team of doctors, and they said, "What are the questions that you think we should have here in this kiosk?" And the one question that patients wanted to know, which the doctors hadn't even thought of, was "This migraine is so painful? Could I die from this migraine?" Which you hear that, and you're like, of course, of course, someone would wonder if this pain is going to kill them, but just wasn't on the radar of the medical team. And then the other example that I thought was really powerful was the multiple myeloma research example. So there was a team of people developing and innovating in the multiple myeloma research space, and the doctors, and the scientists, and the researchers were really excited about novel drugs coming down the pipeline, innovative new drugs, but actually the patients were much more focused on the use of dexamethasone and the side effects of it, the potential risks of it being used, and they wanted a clinical trial comparing a high dose and a low dose. And I think there's even a quote in your book where this patient advocate communicates this to the doctor or the researcher, and they respond, "well, that sounds kind of boring," so tell us maybe a bit more about either or both of those examples, because I thought they were really compelling. 

Susannah Fox  

The multiple myeloma example is a great one, because it shows the potential partnership between patient survivors, caregivers and clinician researchers. Michael Katz had been diagnosed with multiple myeloma, and had survived long enough to be able to start and help run very early online patient communities. And so he was talking with hundreds and thousands of fellow patients and talking to them online about their worries, about the side effects, and Katz had risen to become the patient representative for a very powerful oncology research group. And he was very well respected by the clinicians on that group who represented multiple academic centers. And it was Dr. Vincent Rajkumar of the Mayo Clinic who shared this story, who said that when Katz brought this idea to test different dex dosing, they said, "Oh, that's so boring. We've got all these really exciting new treatments to test," but he insisted, he said, "Listen, you guys only see 100 patients. I see thousands through my work. Please try this,". 

Emily Silverman  

And just to clarify, why did the patients want this looked at? Was it side effects that they were having from the dexamethasone? Or what was it exactly? 

Susannah Fox  

Yeah so dexamethasone, as you may know, is first line treatment, and the side effects are so difficult that sometimes people can't tolerate that first line treatment. And so they wash out of the clinic trial and the treatment program. And what the patients were saying is, "give us a chance to see how it responds to a lower dex dosing. Give us a chance to see if we can have more people survive into the next stage of treatment." And because this was something that came out of the patient communities, they were able to fill those clinical trial slots very quickly, which as you know, is an incredibly attractive possibility for clinical researchers and pharmaceutical companies. And they were able to show that survival rates were actually better on the lower doses of dexamethasone. 

Emily Silverman  

So not equal, but better.

Susannah Fox  

 Yeah, but better. And it changed the protocol for treatment of multiple myeloma. And as a feather in the cap of the researchers, I believe it's the most downloaded journal article from The Lancet in multiple myeloma. And it's because it was led by patients, that the idea came from patients, patients helped recruit to the clinical trial, and it had such a positive outcome that it's kind of a triple-threat of a story.

music.

Emily Silverman  

I want to talk about the internet, in social media. Because a common refrain that I used to hear, I actually don't hear it as much anymore, but there was a period of years where I heard this a lot, and the refrain is, don't confuse your Google search with my medical degree. And the idea was, doctors didn't really like it when their patients would go home and Google their illness and come back with all these ideas that maybe weren't accurate, or so on and so forth. And as you write in your book, "In the early days of the online health revolution, the internet frightened a lot of clinicians, as people started gathering, sharing and creating information with each other unsupervised," And then you write also in the book, "Instead of trying to shut down patient led conversations, telling people not to go online, and driving them underground, there should be stable, safe platforms with fact-checking guides and other resources." How do you think about online communities, the risk of non fact based information, wrong information, that could cause harm, making sure that the information has as much integrity as possible, while also acknowledging that there's a huge gray area of things that are not really known. And so information, misinformation, like sometimes it's even hard to tell, so how do you think about that moderation question?

Susannah Fox  

Misinformation and disinformation is a threat to humanity, and therefore we need everyone to participate. We need clinicians to talk about it. We need medical journal articles and other sources of expertise to be open source so the good stuff can be available to everyone. And we need patients and survivors and caregivers, everyone, to understand how to fact check. And I want to say misinformation is posted by mistake. Disinformation is on purpose. Both exist, both are dangerous. Both can be amplified in online patient communities. In a healthy online community that is patient led, caregiver led, we see that misinformation and disinformation are stamped out like a virus. There are strong antibodies in healthy communities against that kind of posting. Questions will be asked, it'll be down voted, et cetera. What's dangerous is that the information river that you might dip your cup into by looking at a certain conversation on Reddit, or just joining a certain Facebook group, you might see something posted in a moment in time that is incorrect, that hasn't been corrected yet, or hasn't been down voted yet. And the danger is that someone might see that and take that as gospel. What we all need to understand is that if you see something posted online, you yourself before taking that advice, should fact check it yourself. That's why I'm really also passionate about open-source publication. That's also why I'm really excited about artificial intelligence. What if we can get access to all the medical knowledge in every language, and have it translated, and have it published at a reading level that everyone can see? And of course, the flip side with artificial intelligence is that it's going to become even more dangerous, that disinformation is going to be weaponized. Again, let's get patients involved in the creation of generative AI tools and not make the same mistakes of the past, driving them underground, denying that they're going to use this stuff.

Emily Silverman  

Help me understand why today, so much medical research is locked away. There are pay walls. Is that a business model thing? You tell the story in the book about this man, Edwin Murphy. He's a 58-year old insurance agent. This was, I think, decades ago, before the internet, and he had a chronic hip injury, and saw this physician who recommended a new surgery, and he wanted to basically, the pre-internet version of googling it would be finding the medical journal, and he couldn't find it. He couldn't access it, and he was so desperate to access the information to inform his decision that he ended up impersonating his physician and ordering it under his doctor's name in an attempt to get it. So clearly, this is a problem that's been going on for a long, long time, just ordinary people not having access to the research, to the data, to the information. Why are there pay walls? And is that an easy problem to solve?

Susannah Fox  

We're going through a paradigm shift. We're going through multiple paradigm shifts. The first paradigm shift is that regular people became aware that there is medical knowledge that they don't have access to. And now people are aware that it's available online, but they have to pay twenty five dollars or more to have access to a single journal article. All of this is because there's been essentially almost a priesthood, this idea of if you are taught something you should hold it close, that your power lies in holding that knowledge close, and that you shouldn't share it with an open hand. So that's one paradigm shift. The other paradigm shift is one in business models. Let's just be honest that the business model for a lot of medical journals is to charge a very high subscription rate. We're going to have to figure out a new business model for this work, because the future is open, and humanity is going to benefit the more open we are with medical journal publication, with access to data of all kinds, and we're living through this uncomfortable change. I like to say I'm from the future. I'm just here to tell you what is going to happen, and that's because I hang out with the pioneers, people living with rare and life changing diagnoses, who will break in and steal what they need to save their child's life if they have to. But why should they have to? So much of this work is paid for by US, government research grants. This should be accessible to everyone.

Emily Silverman  

You were the Chief technology officer at the US Department of Health and Human Services from May 2015 to January 2017. That sounds like a very cool and fun job. Tell us about that job and how you got that job, and maybe also tell us about the encounter that you had with Robert Calif, the Commissioner of the FDA, because that was a really great story in the book.

Susannah Fox  

I like to tell people that I'm mentoring, that every day is a job interview. And to do the work that you think needs to be done, even if nobody's paying you for it. And so for many years, I was active in health data conversations and innovation conversations when I was a survey researcher working at the Pew Research Center, but I saw how important these new frontiers were for the American healthcare system, and it threw me into the path of policy makers. And my research started being noticed by people at NIH and at the White House. So during the Obama administration, there were two positions that were created which had the title of Chief Technology Officer. One was at the White House, and the other was at HHS. And I'm happy to say that the role was not to actually have anything to do with running the servers or making sure that the secretary's email worked or anything along those lines. The role was to open the door to innovation, to open the door to entrepreneurship. And the CTO at HHS essentially ran an open health data lab, as well as an innovation lab. People came to my office if they had a question that they couldn't solve at their operating division, and we had multiple ways to help them solve it. We helped run prize competitions, that were open to all Americans, and that's one way that we got incredible ideas that would bring in outside expertise that that government agency couldn't otherwise, frankly, afford. We also would teach federal workers how to think like an entrepreneur, and for three months, they would be allowed to take a question and pursue a solution to that question. And again, in that way, we unlocked this innovative spirit that is very present in government workers, who often have the reputation of being bureaucrats, but are actually some of the most innovative people that I've ever worked with. I came to the role after Todd Park and Brian Civic had been the first and the second CTO at HHS, and what I brought to the role is a focus on patients and a focus on how regular people, citizens, have so many ideas about how to improve healthcare that we don't have an intake valve at our federal agencies. And I was especially impressed by people living with disability, living with low dexterity or low vision, and how they were able to invent hardware to help them live in a way that they otherwise couldn't. One day I had the opportunity to explain what I was thinking about to Rob Califf, who was then and now the commissioner of the FDA, and I described how in thinking about medical devices, you can think about how there are high barriers to entry, and then there are medical devices with a very low barrier to entry, meaning you could make them with duct tape and popsicle sticks. And then you can think also about how some assistive and medical devices are created for one person, and others are for a wider audience. And in describing this, I realized that I felt like I was explaining batting practice to Joe DiMaggio. Here was someone who has deep expertise in cardiology, who had been involved in the creation of medical devices, and I was trying to tell him about how a caregiver could make something at her kitchen table for her child with low dexterity, and how it actually might have implications for assistive devices more broadly. What I loved is that Dr. Califf listened, and I talked about how these ideas can bubble up from patients and caregivers, and they can be adapted and applied to innovations elsewhere, and because of the internet, those ideas don't have to stay trapped at home and trapped in the notebook of an inventor. They can actually fly free and maybe be taken up by someone who has the funding, who has the materials, who has access to testing and labs, and this innovation could really make a difference in people's lives. I'm really glad to say that he's someone who is so open to the possibility of learning from other people that he said, "In all the years that I've spent in healthcare, I've never considered anything other than the top right quadrant," meaning the high barriers to entry, application widely. He had never really thought about the end of the line trials that people are creating at home. And that's my passion, to open up the vista for everyone to see the possibilities ,that everyone has something to learn, and everyone has something to teach.

Emily Silverman  

Yeah, and for the audience to help you visualize it. Susannah puts a diagram in the book. So the x axis goes from N equals one to infinity, and then the y axis goes from a low barrier to entry to high barrier to entry. And then Dr Califf says, "I had never considered anything other than that top right quadrant". So just such a great example of how having you there with your perspective, pushing these ideas can make a difference. Your job at HHS was through 2017. Here we are sitting on the cusp of 2024, 2025. We have a new administration coming in. The world is chaotic. There's a lot of innovation happening in other countries, and we're in competition with those countries. How do you see this moment?

Susannah Fox  

When I closed out my time and was able to hand off the portfolio to the incoming first Trump administration, I am happy to say that I handed it off to Bruce Greenstein, who was the first HHS CTO in the first Trump administration, and he picked it up and ran with it. And I was thrilled that open data and innovation was a bipartisan and even non-partisan issue. That we all want to create space for innovation, and we all want to create space for open data, and I am cautiously optimistic that that can continue through the second Trump administration. That we may have differences of opinion about how to execute and where to focus. But when I talk about the Rebel Alliance, people ask me, "who's the enemy?" Is it a certain company? Is it a government agency? Who's the enemy of the Rebel Alliance? And what I like to say is that the enemy is disease. And as humans, we all need to gather together and create space for innovation wherever we can find it, whether it's in the lab or at the bedside or at the highest levels of government.

Emily Silverman  

As we draw this to a close, I was wondering if you had any messages for people listening who are living with a disease, or their child is living with a disease, and they're seeing a problem show up in their life again and again that they want to solve. Maybe they even have an idea for how to solve, or maybe they just want to find other people in the same boat as them. I know there's a ton of practical wisdom in this book, and I really do encourage people to pick up the book, but in this moment, any messages of advice or wisdom that you'd want to share with somebody like that.

Susannah Fox  

Yes, and this is also for clinicians who are struggling. Who may also be feeling alone and isolated, and that is, there are people who would love to help you, if only they knew how to find you. It takes courage to raise your hand and say, "I have a problem, and I need help." Find the courage, borrow the courage, describe the problem that you're having with as much detail as you can, because you will be a beacon on the horizon for someone else to sail towards. And when you find each other, you won't be alone, and you'll be able to hopefully gather the resources that you need to either find a solution that already exists or create one for yourselves.

Emily Silverman  

I have been speaking to the amazing Susannah Fox. Susannah is the author of Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care. Susannah, this has been a pleasure. It's so nice to meet you. Thank you.