The Rebel’s Guide to Navigating American Healthcare with Susannah Fox

Melanie Marcus: This episode is all about successfully navigating the American healthcare system. If there’s anyone out there who can help us do just that, it’s our guest on today’s episode, Susannah Fox, author of the book Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care.

We’re talking about helping healthcare heal itself on our podcast this season, and that’s why it’s so important to hear from thought leaders like Susannah.

In fact, the last line in the preface of her book is, “Together we can heal healthcare.” On that point, I could not agree more. If we are to help healthcare heal itself, we’d do well taking to heart what she says about ensuring that everyone has the power they need to take care of themselves. And to do this, as Susannah explains, we’re building bridges with each other. We’re connecting to share knowledge and information.

In the end, healthcare is a team-based sport. We win or lose together. And if we’re going to win—if we’re going to heal healthcare—we must heal it together.

Welcome to the show, Susannah, and thanks to our audience for taking time out of your day to listen.

Susannah Fox: Thanks for having me.

Marcus: Today we're talking about navigating American healthcare. We're talking about health care at the 30,000-foot level for the big picture view. And we're talking about healthcare at the ground level where patients and providers live and work. This is a terrain that you know very well, Susannah, as a health and technology strategist, as author of the book Rebel Health, and of course, as the Chief Technology Officer for the U.S. Department of Health and Human Services during the Obama administration.

And I just have to say, in that last sentence in the preface of your book where you wrote, “Together we can heal healthcare.” That is exactly what we're talking about on the podcast this season: “How do we help healthcare heal itself? What prescription can we write to heal it?” But before we get into all that, and there's lots to talk about, we really like to start these conversations at the beginning.

So, let's give our listeners a little background on your incredibly fascinating career. What led to the work you're doing today in health and technology? Where did you start?

Fox: I grew up on the East Coast. We moved around a lot. I was lucky enough to live in Philadelphia and Pittsburgh, and then my family ended up in Princeton, New Jersey. And I first started at Smith College and then transferred to Wesleyan University. And I studied anthropology, which shocked my dad, who was an engineer and had convinced my older sister and older brother to be engineers as well.

Marcus: Why did you choose anthropology?

Fox: It's a license and a practice to be professionally curious. It's a way to enter into a community with deep respect for how they're doing things, and to quietly listen and learn from them. That's the training.

Marcus: Wow. That's interesting. So then when you started your career, you went from anthropology to U.S. News & World Report. Talk about that.

Fox: I was one of those people in their 20s in the early ‘90s. I was a startup kid. I learned how to code HTML and build websites. And so I jumped through that window and first worked for RealNetworks in their startup phase, makers of RealAudio and RealVideo. And then, I decided to totally switch gears and go into media. I helped U.S. News launch their website. I became obsessed with how data can change people's access to information. You probably know the U.S. News hospital rankings and college rankings. We on the web team decided on the website we should allow students and their parents to flip the script, flip the power structure, and rerank the colleges according to what's important to them. And we got away with it until the editors of the magazine found out. But that's where I fell in love with the democratization of data and the rebalancing of power thanks to the internet.

Marcus: Very familiar to me and my early career where you're kind of experimenting and things that you never thought would be, kind of come to fruition and form that foundation of a career. So at what point did you decide you wanted to work in healthcare?

Fox: Well, you just echoed the advice that I give to anybody that I'm mentoring. Which is follow your curiosity, find things that you're passionate about, hang out with people that you want to learn from, whether it's in your volunteer life or at work. And, I got to work with Lee Rainie, who was one of the top editors at U.S. News. And when he got tapped to start the Pew Internet and American Life Project—which turned out to be a division of the Pew Research Center—to study the social impact of the internet, he brought me along. And actually, the first year that I was a researcher—this is back in the year 2000—I was assigned to look at how the internet was changing privacy and security, banking, and healthcare. And guess which one I fell in love with?

Marcus: It's not hard to guess. Wow. So, what were you doing there around healthcare on the internet?

Fox: The bread and butter of the Pew Research Center is national surveys. At that time, people were still answering their phones. And so we relied on telephone surveys. A lot of the work that the Pew Research Center did then and still does today is related to politics and national trends. We were looking at the social impact of the internet, and I started to look at how, again, the internet was flipping the power dynamic when it comes to healthcare. Patients and survivors and caregivers were getting direct access to medical journals. They were connecting with each other. And my mentor, Tom Ferguson, advised me to use my anthropology degree and training to do fieldwork in online communities. He said the only way to see the future is to hang out with the hackers and the cowboys and the artists and the rebels. And in healthcare, that's going to be patients and caregivers with life-changing diagnoses and rare diseases.

Marcus: So, we started in anthropology. We drew the line through to healthcare technology and innovation. Can you tie that line just a little more? What lines would you draw from anthropology to the study of medical care today?

Fox: I think that all of us need to be respectful of the different ways that people solve problems. Whether it's a pharmacist being respectful of a surgeon and vice versa. Whether it is someone who works in the government being respectful of private industry. Whether it is a doctor being respectful of what a patient or a survivor or caregiver can bring to the table. We all need to have a sense of respect for the ways that our different communities practice the pursuit of health. And so that's where I see the role of anthropology being important to modern healthcare.

Marcus: Tell us about your role at HHS as the Chief Technology Officer. How did you draw on your background as the, quote, ambassador to the tech community in Silicon Valley? I think you called yourself the internet geologist.

Fox: Yeah. So I’ve got to give credit to my friend Paul Tarini who works at the Robert Wood Johnson Foundation. He heard me trying to describe what I do for a living and he said, “Oh, I know what you do. You're an internet geologist. Meaning, you look for patterns in the landscape, and you make predictions about where there's going to be an earthquake and where people can build on solid ground.” And I loved that description.

So, the role of the Chief Technology Officer at HHS was to run an innovation lab, also to run the open data initiative, and to be almost like a lookout or a scout for the Secretary and the heads of all of the operating divisions, from NIH to FDA to CMS to Indian Health Services to HRSA, etc. And to be the person who is looking across the technology landscape for both pitfalls and opportunities. And to be an ambassador to the tech community so that we can bring in the latest in expertise when we need it.

Marcus: Alright, so let's climb up to the 30,000-foot view of healthcare. To the terrain that you've mapped as a healthcare and technology strategist. What are the—to use your anthropological view of the world—geological contours of healthcare at 30,000 feet?

Fox: What you can see at 30,000 feet is that most of health and healthcare happens far from the clinic. It happens well outside the view of healthcare leaders and scientists and clinicians. It happens at home. It happens in community. It happens in schools. It happens in those conversations that people are having on social media, asking questions and trying to find answers for themselves. And we're all just making it up as we go along. So that's kind of the iceberg under the water, which is that a lot of this stuff is unseen and unrecognized. And that turned out to be a big part of, not only my research when I worked at the Pew Research Center but also at HHS. You really get quite a different view of the American healthcare system when you work at that level in the U.S. government. And I actually want to take a moment and recommend anyone who works in healthcare, go ahead and do a tour of duty in your state government or in the U.S. government. Because that's the only way you will truly understand our healthcare system.

Marcus: And where are the big challenges at the 30,000 foot level?

Fox: I would say access to care. Access to primary care, access to mental healthcare. I think that we are going to face some significant cost challenges in the next few years. And I have to tell you that being on a book tour this past year—my book came out in February—and I'm traveling all around the country speaking to all kinds of audiences. And when I go and speak to a general public audience, like in a bookstore, I want to tell you, people are angry. People are very, very angry about the American healthcare system. And they have specific complaints and specific ideas about where we have pain points. And I think that's one of the biggest challenges. That people are extremely frustrated and they don't feel like they have an outlet. And people are even mad that I wrote a book about the patient-led revolution. And I'm not actually calling for, like, a pitchforks revolution.

Marcus: When I take off my healthcare technology executive hat and put on my patient hat, I feel what you just expressed. And I experience it. And it's something that we all in the healthcare field desperately want to change. Which is ultimately what your new book is all about.

So what do you see as the biggest challenges for patients, providers, and caregivers in general today?

Fox: One of the big challenges that I see is there's a disconnect between the suffering that patients and survivors and caregivers are experiencing, and they're feeling that they're invisible. Some of their concerns are invisible to mainstream healthcare. And what I hope is that we can give people more ways to connect and see each other. And that goes for healthcare leaders and clinicians as well. We need to make sure that there's visibility and channels so that everyone can hear each other's concerns. And then we can prioritize and solve the problems.

Marcus: Where can technology help?

Fox: Technology can help in a few different ways. One way, if you are a leader who has access to information or data or other resources that could help in the industry or help patients and caregivers: Make sure it's open. Make sure it's available. Make sure that it is readable in many languages. And this is one of my hopes for AI, that the best information can be made accessible in all kinds of ways, all kinds of reading levels. And, if you are a patient or a caregiver or survivor who has special knowledge about what you've gone through, the treatment that you've gone through, or the ways that you are coping, for example, with a disability like a dexterity challenge or low vision. I would love to see everyone sharing their ideas and sharing their hacks so that nobody is hiding their light under a bushel. And we need to leverage the platforms we have like social media, but also build new platforms for sharing.

Marcus: So your book talks about patients as seekers, networkers, solvers and champions. Can you explain a little bit about what those mean?

Fox: Sure. After 20 years of fieldwork in online patient communities, I realized that there are patterns in how people react to a diagnosis. How people react to a health setback.

And, what immediately emerged were three archetypes of the patient-led revolution. Seekers who aren't getting answers to their questions, and they go on the hunt and they don't give up. That's the main thing to know about seekers. They will not give up.

The second group are networkers. They're the most visible people in the revolution because they're the ones who are creating hashtags on social platforms. They're creating Facebook groups. They're the ones who are kind of loud and out there. They learn in community. If they find something that works, they share it. They're incredibly powerful partners, by the way, for entrepreneurs and any kind of leader.

The third group that emerged are solvers. Solvers are people who, if they encounter something that doesn't work as well as it should, they take it apart and put it back together again. Whether that is a medical device, an assistive device, or a system like a clinical trial that isn't working very well.

The fourth group emerged, actually, in my interviews with seekers, networkers and solvers. All of the people that I interviewed—I did about 100 fresh interviews to make sure that these archetypes really resonated with the people that I was trying to describe—they all talked about a person who had access to a powerful resource, and the champion shared that resource with a patient-led team. And that resource could be funding. It could be regulatory guidance, access to a special lab or manufacturing facility. It could also be media attention. And those champions recognize a peer-led, caregiver-led team, and they get them the resources that they need to fast-track their innovation.

Marcus: So as we talk about seekers, networkers, solvers and champions, is there a story that just brings that home for you? You've talked to a lot of people.

Fox: Yes. When I think about these groups, I think about how the Type 1 diabetes community represents the full stack of the patient-led revolution. Seekers who are not getting answers went out and tried to find ways to deal with insulin-requiring diabetes. And they found each other and became networkers. The solvers in the community noticed that they could get access to the data generated by their own bodies or their children's bodies by essentially jailbreaking a continuous glucose monitor, sending the data to an Apple Watch, and sharing how they did that on Twitter. You can imagine that the medical device companies were not happy about this and asked the FDA to crack down. But since the patients and caregivers were not selling anything, the FDA looked at this and said, “Actually, what the patients are doing is good.” And it led the industry to start to create devices that share the CGM data natively. So that's when it can really spread to everyone. And so in that case, they stepped into their role as champions.

Marcus: You talk about the idea of a “revolution” and a “rebel alliance” in healthcare, which conjures up this notion of big change. What change do you see coming in healthcare and how will that change arrive? Do we have to rebel to see the change in healthcare?

Fox: Patients have to rebel to see change in healthcare. They are the people who have the most at stake, and yet appear on no organizational chart for any healthcare company, whether it's a hospital, a payer, a pharmaceutical company, anyone. And therefore, patients are rebelling against the system that has kept them for many years locked out and not allowed them to have a seat at the table when designing clinical trials, when figuring out how to allocate access to care.

All of the imbalance of power that has existed due to an information desert has been unlocked over the last 25 years thanks to the internet. And now patients, survivors, and caregivers are poised to help flip the script even more by contributing to advances using AI. So anyone who is thinking about how to respond in this new technology landscape in healthcare, you have got to work directly with patients, caregivers, and survivors. They are people who know what they need and they are ready to contribute to your business or your policy.

Marcus: You just gave me chills when you said patients have the most at stake and they're on no one's org chart.

I mean, we talked about the internet geologist, but you also talk about peer-to-peer healthcare. Can you explain what you mean by that?

Fox: That was a phrase that came to me as I was writing a report based on both a national survey and months of fieldwork in rare disease communities. Rare disease communities are very special to me. They were the first to really embrace me and bring me into their communities and teach me their incredible ways. If you want to see the future, hang out with rare disease moms. Half of rare diseases are [those seen in] babies and toddlers and they were early on data sharing. They were early on every technology trend in healthcare. The rare disease communities are generally about 10 years ahead of everybody else.

When I was writing that report, I had this idea. Again, it was actually somewhat inspired by being brought up by my dad who loved code. Like when I was growing up, my dad was always reading C++ code books, and so I had a love of code very early on. And so I knew about peer-to-peer networks and the structure of the internet. And what I realized is that the patient communities, especially in rare disease, are creating peer-to-peer healthcare. And just like the power structure is flipped, by instead of having the traditional top-down structure of a lot of early computer structures, the same thing is true in healthcare. That instead of it being just a top-down, “doctor knows best” situation, so much knowledge is being unleashed by peers connecting with each other and sharing information. So that's the origin of the phrase peer-to-peer healthcare.

Marcus: Entrepreneurship appears to be a major theme in your career. What market needs did you identify as the entrepreneur in residence at the Robert Wood Johnson Foundation?

Fox: One of the challenges that we talked about was that the Pioneer Fund is meant to bring in out-of-the-box thinkers. People who normally wouldn't think of themselves as a typical applicant to the Robert Wood Johnson Foundation. But they seemed to not be able to get the word out to all the communities that they really wanted to tap into. And so I did some fieldwork. I talked to some of these rebels, as I now call them. And they said, “Yeah, we didn't even know there was a Pioneer Fund.”

And so we redesigned the application process to make it much easier for someone who has never ever filled out a grant application, to understand the process. So we created videos. We uploaded an application [where] instead of having to start it and get through it all in one sitting—we just made it a lot easier. And that again, was a democratization of information, a democratization of access. And I always want to find ways for people to, again, understand the community that they're trying to serve and designing an application or designing a service that responds to the community, not your own assumptions.

Marcus: Our listeners can't see Susannah, but as she's talking about this topic, the whole time, her eyes are lit up. You hope you can tell in her voice, but you can tell she's passionate about this topic. And that's who we need leading this kind of work. So, thank you for that.

The innovation lab you led at HHS—staying on the innovation and entrepreneurship kind of theme—had an entrepreneurship in residence program. How did that lab work? What was your focus?

Fox: I loved this job. Again, I didn't know that it was such a cool job when they first approached me. But then as soon as I understood that the innovation lab was where anybody across this 80,000-person federal agency—anybody who had a strange idea, anybody who had an idea that could potentially help the American people in their operating division—they would come to our big table. We literally had a big table where people brought ideas. And me and the incredible staff who worked at the Office of the Chief Technology Officer in the Humphrey Building here in D.C., we would help people. Sometimes an operating division would have a pretty good idea of the type of expertise that they needed. They had a very clear problem that they needed to solve, but they knew they didn't have the expertise in house. That's when I would go out and try to find an entrepreneur, and Todd Park and Bryan Sivak did the same thing. We would try to find exactly the right person to try and fulfill this need.

So, one of the challenges was with the organ donation tracking system. This was a pretty antiquated system. It was completely paper based. During an organ procurement, the doctors and nurses would have to handwrite labels. And there were sometimes 25 or 40 labels that they would have to handwrite for all the different organs to go off on different helicopters and different coolers. And it would contain really important information like blood type and other information. And they knew that they wanted to modernize this. And so they came to the office of the CTO and said, “This is basically a package tracking system. Do you have anybody in mind who could help us?” And so we created a job announcement. And very happily, David Cartier, who had been an executive for UPS—a very famous package tracking company—raised his hand and signed up for a two-year tour of duty.

What I love about David is that he came in and instead of spending three months learning, about the system in Rockville, Maryland—which is what HRSA wanted him to do—he said, “Nope, I'm going to go out and I'm going to stand in the operating room and I'm going to watch how people do their work.” Because at UPS, you start out, even as an executive, everybody starts out driving a truck because you can't understand the business unless you do that.

And so he designed a handheld printer that you could type in the information once and print out many labels and a QR code so that the tracking could happen much more quickly and much more accurately. And that is a system that is in place today.

Marcus: It stands to reason it would come into the entrepreneur element as well. 

Healthcare is and has been undergoing massive technological transformation. Although the industry lags other industries in terms of digital modernization. Why do you think that is?

Fox: Part of why that is, is that there are lives at stake. So we can't move fast and break things. We need to move slowly and sustain things. There are also some choices made in the early days, for example, of electronic health records that made it so that billing codes became more important than the clinical workflow.

I am a very natural optimist. I should say that my dad was actually diagnosed by his therapist as irrationally optimistic. And so I think I carry that gene. And so I really believe that we are entering a new age where we're going to leave behind the mistakes of the digital past. I think that FHIR API is one way that we're going to leave that behind. I think people are going to demand true interoperability and true access to data. I think OpenNotes is a way that we are seeing the revolution come to this. So even though there have been some ways that healthcare is still a backwater—we're still the only industry that still uses fax machines, which I know is a punchline, but it's true—I am super excited about how we can open more doors and windows and have unexpected people walk through and help us.

Marcus: No, that's great. This is one of my favorite parts of the conversation. Just where we kind of summarize it and you talk about what needs to happen for healthcare to heal itself. The elements are here in the healthcare system. It's just figuring out how to put them together in a way that helps us do better. So, feel free to answer these questions however you like. But healthcare is hurting. What's your diagnosis for what's wrong with it?

Fox: I think that we lack a sense of connection. And I think that we are not all truly seeing each other and seeing the suffering and seeing the opportunities for change. And therefore, what I think we need is to realize that we are not alone. That goes for executives. You are not alone in your struggle. There's someone else at your company who could help you. And that goes for people on a personal level. No matter what you are dealing with, there are people who would love to help you if only they knew how to find you. Please raise your hand, express yourself, find ways to describe the problem that you're having so that people can help you.

Marcus: So, that's your prescription and it's how you'd heal healthcare. And is that the prescription you'd write, is basically raise your hand so people can find you?

Fox: Be brave enough to raise your hand and ask for help and look for opportunities to connect.

Marcus: Susannah, thank you so much for an amazing discussion. It was just a pleasure to have you on the show.

Fox: Thank you so much.