We will explore the key insights and strategies from her groundbreaking book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care. Throughout the interview, Susannah will share her expertise and insights on how listeners can become active participants in the patient-led revolution, whether they are patients, caregivers, or healthcare professionals. Listeners will come away with a renewed sense of empowerment and a clear roadmap for driving meaningful change in healthcare.
Megan Antonelli, Chief Executive Officer, HealthIMPACT
Janae Sharp, Founder, The Sharp Index
Susannah Fox, Author, Rebel Health
[00:00:30] Megan Antonelli: Hi, and welcome to Health Impact Live Digital Health Talks. I'm Megan Antonelli. I'm here with my friend, Janae Sharp, and I'm thrilled to introduce our featured speaker, Susanna Fox. Susanna is a renowned researcher who has made significant contributions to understanding the impact of technology on healthcare.
She served as the CTO at the U. S. Department of Health and Human Services under President Obama from 2015 to 2017. Prior to that, she spent 14 years leading groundbreaking work at the Pew Research Center on how patients and caregivers are using digital tools to revolutionize their care. With a background in anthropology, Susanna brings a unique perspective to the intersection of health and technology.
She is a strong advocate for empowering patients and lowering barriers to entry for health innovation. In her new book, Rebel Health, she explores the patient led revolution in medical care. Please join me in welcoming this digital health pioneer, Susanna Fox.
[00:01:27] Susannah Fox: . Hey.
[00:01:29] Megan Antonelli: How are you?
[00:01:30] Susannah Fox: I'm great. Glad to be here.
[00:01:31] Janae Sharp: Yeah. We are thrilled today to sit down with you. You wrote a book. So tell us, tell us about your book.
Just the, you know, two sentence summary for people in our audience. And then we're going to go into it.
[00:01:44] Susannah Fox: Okay, great. So Rebel Health is a field guide to the patient led revolution in medical care. It is not about the financial side of healthcare. It's about treatment, innovation, device innovation. All the ways that patients and survivors and caregivers can contribute to the ways that we all want to improve healthcare delivery and public health.
[00:02:12] Janae Sharp: I love that. And I love, like, as someone who, you know, is a lost survivor and like cares deeply about that. Um, I, I love this book. I want to start to talking about the four patient archetypes. Which I think was critical because people sometimes when they talk about patients, it's like always the same type, right?
So we talk about the seekers, the networkers, the solvers, and champions. So my question is, which one are you?
[00:02:38] Susannah Fox: I'm definitely a networker. I've never met a stranger. I will fall into step with someone walking and they'll be at our house for dinner later that day. I love to learn from people. And one of the surprises of the book was actually looking back at, , all 20 years of my fieldwork notes and then doing fresh interviews, discovering how many people actually don't want to be social around their health.
Let me go through the four archetypes to explain a little bit more. Seekers are people who are not getting answers to their questions and they decide to go out on the hunt for information and they don't give up. Networkers are people who learn in community. They join groups, they form groups, they pool resources.
If they find something that works for them, they can't wait to share it with a larger group. Solvers are people who just naturally can't wait to take something apart and put it back together again better, whether that's a medical device, an assistive device, or, um, a system like, um, being part of a clinical trial that could have been designed better.
Champions are people who have access to mainstream resources, who scan the landscape and notice a patient led or caregiver led team that could use, for example, some funding, regulatory guidance, access to labs and manufacturing facilities. Um, Media attention is one mainstream resource that can be very powerful for a patient led group.
So in my life, I identify very naturally as a networker, but I've also played the role of champion when, um, actually by writing this book, by shining a spotlight on the patient led revolution.
[00:04:29] Janae Sharp: I like that. I think most of our audience is champions, right? Like, you know, you better be.
[00:04:33] Megan Antonelli: Right. Yeah, well, I, you know, I love the book right here.
Um, and I, you know, absolutely in different parts of my life and different roles that I've played have felt, you know, have been an identified with the seeker that certainly the networker, um, the solver. And, um, the champion. And I think, I think it's such a, a great way that you've laid it out. Um, and In the book, you tell a lot of stories, you know, and in terms of highlighting what those roles are. You know, Share with our audience a little bit about, you know, maybe one of your favorites or one of the best, um, you know, real solutions that really created some, you know, transformation.
[00:05:04] Susannah Fox: Great. I'll share about, um, the type 1 diabetes community because they represent the full stack of the patient led revolution. So to an outsider, someone with a diagnosed insulin requiring type 1 diabetes, it might look like a solved problem, but to anybody who lives with it, they know that it's a daily slog with very high danger levels. And if you are a parent of a child with type one diabetes, you often historically have had to set an alarm every two or three hours throughout the night to go into your child's room and make sure that their blood sugar isn't going low in the middle of the night. And that is no way to live.
Um, Happily there of course is, um, access to insulin and continuous glucose monitors and insulin pumps. It's uneven access and sometimes at a very high cost, but we do have that technology. Um, but. Uh, Device companies have historically seen doctors as their customers, not the families and patients who use the devices.
And so the data was locked up in the continuous glucose monitor until a group of patients decided that they needed to get access to that data. So, I'll talk first about Dana Lewis. Dana Lewis is an adult living with type 1 diabetes who found that her CGM, I'll start using that acronym, the alarm wasn't loud enough to wake her up in the middle of the night.
And so she wrote to the device manufacturer asking for a louder alarm. They said no. She is a seeker and a networker. So she started doing research and gathering together on Twitter with other people who people who are living with type one diabetes. Starting to brainstorm about ways that she could improve her life if she had access to the data. Across the country in upstate New York, John Kostic, a dad of a four year old who had a CGM decided, wait a second, I think I can actually hack into, essentially jailbreak the CGM to get access to the data and send it to my Apple Watch, which he did. And he shared how he did it on Twitter. The whole world then started following this recipe, essentially, and they started creating tools. Dana Lewis, back in Seattle, created a louder alarm for herself.
Other people created Night Scout, a way for people to parents to monitor how their kids are doing, whether they're at school or um, sleeping over at a friend's house or even sleeping in their own house. So what we see there are seekers, networkers, and solvers who are creating tools.
The story really gets interesting when Amy Kenrick and other networkers with powerful connections to the ADA, the American Diabetes Association, the FDA, Food and Drug Administration, um, and device companies. She started gathering people together in an annual conference. This is key, getting people together, either virtually or personally. In real space to talk about these challenges, Amy stepped into her power as a champion.
And by the way, so did many device companies and regulators who said, we didn't understand this before, but thanks to these patients and caregivers, we understand that people should have access to their own data. It's been 10 years, and we're seeing so much innovation in this space. And my question for the audience is why not elsewhere?
We have very good access to our medical records. We have now good access to the data in continuous glucose monitors. What's next?
[00:08:53] Megan Antonelli: That's amazing. And you know, I think it is such a great, great story and I didn't even ask you to say that bringing people together and convening them in a conference was the best way to do it, but it's , um, and it is, you know, and it is a very powerful way to, to make action happen.
Right. And, and make change. Um, so that, that is, it's, it's an amazing way to see the patient patient led revolution really take shape and take hold.
[00:09:15] Janae Sharp: I, um, I have another question besides that we love, I mean, conferences, we'll see that shout out. You're going to have to come to all the health impact conferences.
Um, and we talked a little bit about the way that helps make change. Like a lot of healthcare professionals that I've spoken to and know, um, they're frustrated with, with limitations of the system, um, whether that be, you know, reimbursement, technology, there are, there are lots of ways to get frustrated, right?
Um, how can they be allies? Like, how do they bring that forward and, and really understand a patient led revolution and what role do you see them playing?
[00:09:50] Susannah Fox: One of the reasons why I wrote this book is to help people see the diversity of the patient population, to see that although we often think of networkers, because frankly, networkers are so loud on social media, they're the most visible part of the patient led revolution.
There are also seekers and solvers and champions within that, within that population. And so can we call them the lurkers too? I feel like that's another category. Yeah. So, so there's a lot of lurkers. And, and I also want to say, if anybody who's listening to this is just thinking, I'm tired already, just hearing about this.
I don't have the energy. Please know that you don't have to become a seeker, a solver, a network, or a champion. You can recruit somebody to your team to do that work for you. It's a great role, for example, for a, for a good friend or a family member who lives far away, um, for them to become a seeker on your behalf.
But in terms of healthcare, uh, professionals, if you are serving patients, if you are someone who's seeing patients, one way that you can align yourself with the patient led revolution is to acknowledge. That people are going to go online, they're going to go online, um, probably in the waiting room before they see you to prepare for the appointment and immediately afterward to recover from the appointment.
Make sure that people know how to spell the diagnosis, make sure people know how to spell maybe the, the drug that's being prescribed. Um, go a step further and acknowledge that they are likely to try to find a group, try to find other patients like them. Um, my research shows that about one in four, um, adults in the U S has gone online specifically to find someone who shares their same health condition.
It would really be smart for more clinicians to have some recommendations about where to go. And there are quite a few reputable organizations that host online discussion groups. So doing a bit of research and being an ally in that way. Another way that, um, that you can think about it is, for example, if, as we move towards value based care, we really want people to stay well.
We want people to take their medications. We want people to do their PT. We want people to stay out of the hospital. And so therefore you can leverage the patient led revolution. Because it's there's research that shows the more people are connected peer to peer, the more likely they are to understand why they need to follow, um, the guidelines and, uh, and they're more able to tap into all of the knowledge of a caregiver network so, so that they don't feel alone because that's dangerous.
[00:12:38] Megan Antonelli: So, I mean, going back to kind of the beginning of this, um, you know, where I remember, you know, like patients like me and those, those companies that started and really, to some degree, the pharma industry has been more open to and embracing the patient led revolution, then. You know, hospitals and health care systems, which of course is a little bit of, you know, makes you nervous, right?
You know, in that the reason they're going after that market is for marketing purposes and things like that. So tell me a little bit about, you know, why you think that is and how, you know, I mean, certainly there's, there's a lot of. Talk about patient engagement and, and patient driven care and patient centered care in hospitals, but how much is it really happening and, and where and, and, you know, what do you think we can do to, you know, or what they can do to really make it happen.
[00:13:27] Susannah Fox: Thank you for this question because. I'm very hopeful. I think that there are pockets of progress all across the healthcare system. Yes, lots of early peer to peer healthcare groups were focused on pharma and still are, like PatientsLikeMe, like Inspire. They were looking to not only market to patients, but, but in a, um, in a really beautiful way to learn from patients.
What are the research targets that patients would identify? For example, that's very important, especially as we, um, go and look at the frontier of, of some of these life changing conditions, um, that are very challenging to study and very challenging to find treatments for. Partnership with patients and survivors is going to be key for.
Uh, pharma innovation, but there's also pockets of progress. Um, there are certain hospitals where. When someone's diagnosed with breast cancer, they are immediately paired with a breast cancer survivor. That should happen everywhere and among all cancers. Um, there's also, uh, some really, uh, wonderful work that's happening, for example, at a company that I advise, Equip, which is looking at eating disorder recovery.
It's very, very costly, uh, to bring someone in for inpatient clinical recovery, um, from eating disorder. And Equip is a virtual first, Um, company that not only creates a peer mentor for the person who's going through treatment, but also for the family. Again, that's a model that can be spread all across our health system and I think can really lift us up in a lot of ways.
[00:15:10] Janae Sharp: I wanted to, it's true, like peer to peer is so powerful and it's so important. I wanted to circle back to some of the stuff we're talking about, like with, with changes and then one of the chapters in the book talks about COVID 19 and, and that frustration is still something people will talk about. And the.
book, I have to say it's super positive, like talking about what people learn and how people can learn to change. And I thought that would be valuable for audience, our audience to kind of talk about that positive example and also like lessons learned, like what, what people need to do.
[00:15:45] Susannah Fox: So in 2020, um, in very early on March, 2020, April, 2020, we all were told and believed that COVID 19 is for most of us going to be like a two week flu, and it's going to be most, mostly a respiratory illness.
But there was a group of patients who were experiencing a much wider range of symptoms for a much longer amount of time. And they started gathering together online, talking with each other. And what emerged from that group of people was the patient led research collaborative for long COVID. This was a group of patients who did an international survey online.
and gather data about the symptoms that people were experiencing. Now, the term for this is personal science. And, uh, this is an area that again, I'm optimistic about. I think that everyone should have some understanding. about how to track their own symptoms, about how to track what's important to them, and what could be clinically important so that we can all solve health mysteries, whether they're personal health mysteries, or in the case of COVID 19, it was an international public health mystery.
And it was the patients, who stepped forward and, uh, and created this opportunity for scientists to learn from patients. And, um, they, you know, we're still struggling with long COVID. It, it has a lot to do, um, with other post viral illnesses like ME CFS. And so, It's not yet a solved problem, but it was patients who named this condition, measured it and got the attention of the world.
And that's the kind of model that I could see going forward. Right now we're leaving patients and caregivers on the bench and we need to bring them onto the field.
[00:17:38] Megan Antonelli: Yeah, I mean, it's really true. And I mean, ultimately, it comes to the fact that the health care system was built the other way, right? And it was built based on, you know, needing the, you know, extensive clinical trials and research and evidence, which are all very important.
Um, but, you know. It leaves a lot behind, right? And, and whether that's rare diseases or, um, you know, things that are difficult to diagnose and mysteries, as you said, I mean, it's so important that we are, have a way. And of course, to talk a little bit, you know, our audience, a lot of health system CIOs and technology and innovators.
And technology, I mean, ultimately the Internet has is what enabled this patient read lead revolution, right? The ability for those people to convene and get together, you know, over many miles and cross boundaries to communicate. You know, and we see our, you know, health system CIOs who have gone through a patient experience and they'll get inspired and, and, and understand for the 1st time, even though they've worked in health care, their whole lives, they'll understand for the 1st time, how important it is to look at things from the patient's perspective.
Talk a little bit about, you know, as we are looking at, you know, AI and the technology that's there. I mean, we're, we're in the middle of a brand new revolution around technology. Um, what are some of the promises that you see, you know, the potentials that you see there, um, to, to sort of help and empower the patient.
[00:19:01] Susannah Fox: What's, what I love about the patient led revolution is that every generation is building on the previous one. This is actually a very long American tradition that people who find themselves on the margins, who find themselves left out of the mainstream healthcare system, band together, band together.
and either just take care of themselves, um, or they fight their way into the system for recognition. Um, there's examples of it all throughout the 20th century. And, um, and so we are, each generation is building on that. And I think artificial intelligence is going to again, be able to build on the patient led revolution by, um, acknowledging that there's so much wisdom In patients in these peer to peer groups, that is not part of the literature, it's not yet part of what is being taught in medical school, we have the opportunity to actually, um, learn from patients and learn from survivors in ways that no human could ever be part of all of these groups and become an expert on what is the patient experience of someone who's living with rheumatoid arthritis?
What is the experience of someone with early onset Parkinson's? Um, but, uh, it's, you know, the, what I'm really hopeful about is the ability for AI to Um, we have that learning again that, that no human could, could possibly learn if we had all the time in the world, but AI can teach us about that. That's true.
[00:20:40] Janae Sharp: I also want to, while we're talking about AI and those things, I want, maybe we could talk about it from the digital, you know, your digital expert perspective, right? We have a lot going on with stories about internet security. Um, You know, whether or not patient data or patient communities are in safe places, um, and I think we've seen great empowerment in terms of like, you can connect and you have access to more information than ever before.
And on the other side, we also have access to, um, more, um, vulnerability for patients than ever before. Um, and even, you know, whether or not there will be bad actors or this data will only be used to, like, deny claims, you know, we've heard all like, I'd love to hear your perspective about a positive path forward with those.
[00:21:29] Susannah Fox: Well, I should, I should say that my dad was actually diagnosed by his therapist as irrationally optimistic. Um, and I think that we might in the future find out that it's genetic because I am irrationally optimistic. And so I, I do try to, I try to be, um, mindful of the realities that, that there are dangers.
Um, you know, the, and, uh, I, I want to bring in, um, The Light Collective, which is a patient led group that talks about the dangers of, um, patients not owning their data, not having secure platforms in which, um, they can have private discussions that stay private. We, we need that. And, and one of the hopes that I have, um, Is, is that people understand the potential of the patient led revolution and invest, invest in secure online communities for people to connect, for example.
Um, uh, what I really believe is that the more we give access, the more we give people access to the information, data, and tools that they need to solve problems, they will. We need to remember that most of health happens outside the clinical realm. We also have so much data about us that could. be, um, be useful and could make us vulnerable.
And that's out again, outside the clinical space, all of the wearables data, um, that again is an aspect of what I talked about before, personal science. Um, Let's make sure that, that we have equitable access to the tools that people need and equitable access to the data that can help people contribute to science.
[00:23:07] Megan Antonelli: I love that. I wish I was an optimist. I am. I mean, I am. I'm not. I'm not at all. I try. We do have a podcast. It's called five good things. We do. We do. We do feature five good things. Um, but mostly that was just to cheer ourselves up. Um, but it is, you know, but it's very good to think of it that way. And I think that.
There is so much positive potential, and I am an optimist, and I believe that that is true. Um, I think, you know, and the positive, we've been talking a lot about, like, health care at home, right? Hospital at home, and talking about how that move is happening, right? Obviously, virtual health, virtual care, but this is, like, true, in fact.
Monitoring people while they're home, you know, while they're sick. And I, you know, and I think it's amazing, right? I have my Oura Ring, I have my watch. I am a big quantified selfer, just to, you know, measure the misery to some degree. As I, as I grow old. But it is, you know, but I, you know, I love it and I think it's so important and I, I welcome a day where I have a monitor to tell me, you know, how, how much did my bones creak when I got out of bed and, and all of that stuff.
And I want it. I would have it now. Of course, there's a lot of people who aren't like me and who would, who would be much more nervous about it. So I'm not, you know, I'm more of an open book, so I don't worry about, you know, sort of the downsides of that as much. But when you think about that, I mean, we could be, you know, to some degree at a point of, you know, full, um, Surveillance of ourselves, whether, you know, ideally kept 100 percent private.
I don't understand why anyone would want to be so bored by the information of how I slept. But, you know, I get it. Um, but what are you judging? But what are your. Thoughts on that. I mean, in terms of from the beginnings of the quantified self, where we get this data to this, you know, sort of what will become, you know, so much data, um, how will we manage that?
And then, you know, is there a point of diminishing return on that information? What does the health care system do with it? I suppose that's to some degree where AI comes in, but tell me what your thoughts are on what that vision is of, you know, monitoring data. Having that data, having access to that data, let's hope it's protected.
But you know, what's the, what's the promise and potential there?
[00:25:05] Susannah Fox: Well, I got advice really early on in my career to, if I want to see the future, to go out to the frontier and talk to the pioneers. And the pioneers in healthcare, the people who are living on the frontier are people living with rare disease and life changing diagnoses.
And so when I want to think about where are things going, I talk to them. They were early on genetic testing. They were early on getting access to their medical record. Um, back when, when rare disease moms were called binder moms, um, because they would have the whole dang thing printed out and they would carry it around with them.
Um, and so I will always. fall on the side of giving people more access to data is good. Giving people more access to tools is the right thing to do. And There's a lot of talk about people not, um, activating their portal login or not getting access to data even if, um, they're given that access. And I say, just wait.
There may come a day when someone needs that data. And we as a health system need to be ready to meet them where they are to solve the health mystery that they're facing. And so the more, I'm very much in favor of open access, open access to data. And by the way, open access to medical research, we as American taxpayers pay for it.
It should, for the most part, it therefore should be open access to all because of that. I, I'm a, I'm a total. Open access advocate. Um, and of course, the, the, we have to weigh security. Um, there's always going to be a challenge there. And, um, just like we learned so much in the COVID 19 pandemic about public health, where people learned about like, you know, crushing the curve and people understood about, you know, hospital capacity.
I think we have an opportunity that people could start to learn about that. Data security, um, we can start to have a public conversation about this. Unfortunately, we're being forced into a public conversation by, um, security breaches. So how might we actually spread that to a broader population so, so people have the opportunity to learn really what we all want them to know about security.
[00:27:24] Megan Antonelli: Right. Well, and as I mean, as, as we've watched this transform over the years, I mean, the next generation will be more educated on it. You know, certainly my kids, you know, having their TikTok accounts hacked and all of this stuff as a child, they understand it now.
[00:27:38] Janae Sharp: They're also better at getting online than I am.
It's a sensitive problem. Yeah, for
[00:27:40] Megan Antonelli: sure. So as, you know, as we adapt to those generations, they'll know what to do and how to protect their data better, hopefully, right? In the optimistic view of it. Um, but I, you know, I agree with you a hundred percent that open data, you know, and the empowerment of patients is ultimately what will lead to, you know, better healthcare and, uh, you know, and that patient centered sort of innovation is, is what's needed.
[00:28:01] Susannah Fox: And I would say beyond patient centered, I was very mindful in using the words patient led, survivor led, caregiver led, because it really is our opportunity in mainstream healthcare to let patients lead, to not have a token patient, but actually to bring in whole teams of patients with different perspectives.
Your products are going to be better. Your services are going to be better. Um, It's, I think it's really important to shift our thinking from, um, patient centered to patient led.
[00:28:34] Megan Antonelli: Yeah. Yeah, no, that's a really good point. And I love that.
[00:28:36] Janae Sharp: So just in closing, how, what's your invitation? Like, how do people join this patient led revolution?
[00:28:44] Susannah Fox: I would love people to know that, You are not alone, whatever you are dealing with, 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 that you have a question or that you need help. Whether you are a patient, a survivor, or a caregiver, or a healthcare executive, know that you can step into your power and become a seeker, a networker, a solver, or a champion.
[00:29:13] Megan Antonelli: I
[00:29:13] Susannah Fox: love
[00:29:14] Janae Sharp: that.
[00:29:15] Susannah Fox: Yeah,
[00:29:15] Megan Antonelli: thank you. Well, thank you, Susanna. Thank you so much for joining us. If you'd like to learn more about Susanna's book and her work, um, you can order Rebel, Rebel Health, I think, on Amazon and all, all places that you can get it. Um, Rebel Health, A Field Guide to the Patient Led Revolution in Medical Care.
Thank you so much. Once again, thank you, Susanna, for all that you do and, um, you know, really for sharing the book and sharing, you know, this, this great way of, of thinking about how we engage as patients in, um, innovating and driving healthcare forward.
[00:29:41] Susannah Fox: Thanks for having me.
[00:29:42] Megan Antonelli: Absolutely.