Susannah Fox is a pioneering figure at the intersection of health and technology. With her expertise and dedication, Susannah has carved a niche for herself as a patient advocate and a leader in healthcare technology. She has been vocal on issues of patient empowerment, emphasizing the importance of patient-centered care and the role of technology in enabling individuals to take control of their healthcare. Susannah is a researcher and the former Chief Technology Officer for the United States Department of Health and Human Services (HHS). There, she played an important role in guiding the nation's health technology policies and initiatives during the Obama administration's efforts to modernize our healthcare system.

Her latest endeavor, the book "Rebel Health: Illuminating the Path to Participatory Medicine," encapsulates her insights into the evolving landscape of healthcare through the narratives of the patient experience. "Rebel Health" explores a future of health characterized by collaborative partnerships between patients and healthcare providers empowered by technology.

I'm Damon Davis, and this is my discovery diary with a leader in the patient-led healthcare revolution and the author of "Rebel Health," Susannah Fox.

010 - Susannah Fox, Rebel Health

Today, I'm happy to bring you a pioneering figure at the intersection of health and technology. Susannah Fox. With her expertise and dedication. Susannah has carved a niche for herself as a patient advocate and a leader in healthcare technology. She has been vocal on issues of patient empowerment Emphasizing the importance of patient centered care and the role of technology in enabling individuals to take control of their healthcare. Susannah h is a researcher and the former chief technology officer For the United States department of health and human services or HHS. It was there. She played an important role in guiding the nation's health technology policies and initiatives at a time when the Obama administration was working to help modernize our healthcare system.

[00:01:28] Damon: Susannah Fox. I'm so thankful for you for your time coming here today. This is really great to reconnect with you. I appreciate you making time to be here.

[00:01:38] Damon: Thank you so much. So one of the things that I would love to do is take people back. Not everybody knows who you are, how fantastic I think you are.

[00:02:03] Susannah: Well, I'm going to take us even further back and say that my dad was an engineer who at night would, you would find him either reading short stories or code books. Like he loved like C code and was a really early internet user. So that's something to know. And my mom is a writer and a dance critic and a, and a business editor.

[00:02:38] Damon: right in line with

[00:02:50] Susannah: But what I saw is that anthropology is a way to be professionally curious about other people. [00:03:00] And it's a, it's a methodology that you can use in all sorts of ways. In my twenties I built websites. I jumped through that internet window of the 1990s and fell in love with the possibility of the democratization of information and data.

[00:03:39] Susannah: And that was an example of how I love to flip the power hierarchy. And then I, I brought that into research. So, it's, it's been a journey , where I've been able to follow my curiosity which I recognize as a privilege. to be able to follow my curiosity into these different fields and [00:04:00] found myself in in at the intersection of health care and technology, which is where I've stayed for the last 20 years.

[00:04:21] Damon: What was that intersection of technology and healthcare? How'd you get started in that space?

[00:04:42] Susannah: Only 5 percent of us had broadband. We didn't have smartphones. They wanted us to look at the social impact of the internet on the United States. And we came up with a list, a topic list of things where we [00:05:00] had a hunch that, that the internet was going to have a significant effect on civic life, on education, on privacy and security, on banking, on healthcare.

[00:05:45] Damon: Oh my gosh. Are you serious? Yeah. I thought you were about to make a give birth metaphor for the report, but you're talking about a real person.

[00:06:11] Damon: And,

[00:06:45] Damon: Yeah, that's a really wonderful recap of what we've been through, because as you were speaking, I was thinking about the absolute interruption and opportunity that the internet gave us at that time. I mean, I couldn't help thinking about. [00:07:00] Us being at a similar inflection point of A. I. S. Introduction into literally everything we do and also what you talked about in terms of people taking surveys to answer how they were using stuff.

[00:07:35] Damon: I mean, it must be a marvel for you to think of how far we've come, potentially how far we have to go. So amazing.

[00:08:06] Susannah: And if we don't get their insights, then we're leaving half the team on the bench.

[00:08:18] Damon: I. As a tool to support the writing and also the image creation. And one of the things that I found are some of the implicit biases, that A. I. Has within it. And I wrote about it on linked in the notion that if I create a prompt that requests information about a certain family structure White family with one child playing on the floor looking at , their, daughter.

[00:09:09] Damon: Basically AI won't allow us to, I'm telling you, I made some screenshots. That basically AI said, unfortunately, we can't create that image. And I'm thinking to myself, you can't put a, like a black man in a blah, blah, blah. You don't have the data that allows that. And what that suggests is that there are a dearth of positive images about certain.

[00:09:57] Damon: Super, super clever, but one of the things that she [00:10:00] said was not only was she one or one of two women in her whole class, but that was developed, developing some of these innovations, but that when they went to scrub the data and try to find information about women's heart health. 85 plus percent of it or some ridiculous number was men's heart health information.

[00:10:38] Susannah: Yep. And, and that's where the, the AI starts to, to have hallucinations and, and fill in the gaps by making something up.

[00:11:03] Susannah: And to feed that into AI and get a clinical summary. That's what one startup I know Synapticure is doing because they focus on neurodegenerative diseases like ALS and Parkinson's, where by the time someone is coming to them you know, to coordinate the care they've got this huge stack.

[00:11:46] Damon: Yeah, I agree. 100%. And I'm glad we went down this little AI journey because we're not escaping it. So we may as well face it and acknowledge its opportunities and challenges. Before we get to the book though, , one of the things that [00:12:00] we have in common is our time in government service at the Department of Health and Human Services.

[00:12:21] Damon: And we were, working on electronic health record adoption across primary care. And one of your initiatives was really focused on the doers and The healthcare space. Do you want to talk a little bit about what inspired you to bring that lens of the maker movement to HHS , and, how that feeds into what we'll get into is, is rebel health.

[00:13:06] Susannah: And in addition to those portfolios, , the CTO was also charged with being the lookout, the person who sees, scanned the landscape and helped the leadership understand what are the opportunities and what are the threats that are coming towards us in terms of technology, in terms of innovation.

[00:13:57] Susannah: group that was missing from a lot of [00:14:00] the conversations. And that was , the patients and caregivers, the people who are living with these medical devices and assistive devices that people are creating and regulating at HHS and. And I thought, gosh, one of the opportunities that's coming toward us is the democratization of access to labs and manufacturing facilities, especially 3d printing.

[00:14:50] Susannah: And, and so this was a way to, to open a window to introduce some of these outside innovators to the people within government [00:15:00] who could. could give them advice , and, and help them, but also so that people in government could understand that there's a lot of innovation happening at the bedside that is otherwise invisible.

[00:15:34] Damon: And I could see different people as I was reading because we're all represented for our, our various, participation levels in health care. Rebel health goes into, well, let me, before we go into what the personification is, tell me a little bit about why you even started this. A lot of times people are super motivated by something of passion.

[00:15:59] Susannah: Thank you. [00:16:00] So I spent 14 years at the Pew Research Center looking at the, this intersection of healthcare and technology, spending time in community with patients and caregivers. I, I used my anthropology background actually to do field work.

[00:16:38] Susannah: And that describes people living with a life changing diagnosis, families who are facing a rare disease and they're building what they need breaking into taking what they need if they have to.

[00:16:51] Susannah: And it's in that way that I really stayed ahead of most of the researchers because they weren't.

[00:17:18] Susannah: I started doing some advisory work to Both what I lovingly call legacy healthcare companies, big healthcare companies, as well as startups. And what I realized is that my colleagues in the leadership level, the C suite of healthcare hadn't had the privilege that I'd had of learning from these pioneers on the frontiers of healthcare.

[00:18:07] Susannah: They need to work together. I also wrote it so that anyone who faces a new diagnosis or is Dropped into the role of caregiver. So often it happens unexpectedly. Your loved one is hospitalized. You got to get there. You got to, you got to drop into that maze and try and help them. I wrote it so that people can step into their power so that people can step into their power as patients and caregivers.

[00:18:40] Damon: Yeah. So let's get into some of these personas because they. They spoke to me for people that you and I know. And you you've got many, many examples in here. So you identify a seeker, which I think to me was the first element of when you are a caregiver, for example, [00:19:00] or when you just all of a sudden a health condition hits you and you're like, Oh, I don't know anything about this.

[00:19:18] Susannah: Sure. And the way that I came up with these, I looked back at all of these years of fieldwork notes and survey research.

[00:19:49] Susannah: They go on the hunt for answers and they don't give up. That's. what really characterizes a seeker that they do not give up. The second group are [00:20:00] networkers. Networkers are people who learn in community. They're the people who have never met a stranger. They're, they're the kind of people who will get on Reddit.

[00:20:28] Susannah: So networkers are really powerful and very visible part of the revolution. A lot of people, when I start to talk about peer to peer healthcare and the patient led revolution, they immediately think of networkers, but the third group is, is equally powerful and those are solvers. Solvers are people who, if they see something that isn't working, they Can't wait to take it apart and put it back together again.

[00:21:42] Susannah: And so, yeah, that fourth group are champions.

[00:22:02] Damon: We clearly start off as seekers when we're not experts. But then I was thinking about networkers and Jane Sarah Sunkhan came to mind. Very

[00:22:10] Damon: right? Just always, always, always trying to connect with people, connect information to each other, et cetera. When I was thinking about solvers, I thought about e patient Dave, Dave DeBronkart, who's, hyper focused on getting access to his data as much as possible.

[00:22:45] Damon: Niall Brennan, your predecessors, Brian Sivak, Todd Park, Anish Chopra, all champions who had the opportunity to go out and evangelize for folks to Do the work they were going to do and then bring it forward so that we could promote it and make sure that that things [00:23:00] happen. So I don't know if you have other sort of interesting folks that you want to add to some of those buckets, but those are the people that stood out to me.

[00:23:17] Damon: it's

[00:23:34] Susannah: Now I'm a natural extrovert. I'm somebody who loves to, to meet people and, and join groups. But I, in my interviews, actually met a lot of people who were seekers and solvers who had absolutely no interest in taking it further. They solved the problem for themselves. They found their answer but they actually didn't see the, the, the beauty of, of bringing that forward.

[00:24:13] Damon: Yeah. And, as I'm thinking about all of these different personas, I realized that, You may start out as one and end up as another, you may start out as one and realize that you need another as you've indicated, and you might leapfrog, it's not linear, you might not necessarily become, you may start off as a seeker, end up networking and jump to being a champion because you're not a solver, for example.

[00:24:43] Susannah: Yeah. Well, why don't I tell a story about one of my favorite groups is, is what I call the diabetes rebel alliance because they really embody the full stack of the patient led revolution.

[00:25:18] Susannah: But to someone living with this. Really life limiting condition. There are a lot of questions that just can't get answered in the space of a doctor's appointment. And so often people need to become seekers. They go on the hunt for how do I send my kid to school and make sure that they're going to be safe.

[00:26:09] Susannah: There's something that they call the DOC, the diabetes online community. And it's a really strong strong community. It's a renewable resource of insight so that if you can't find the answer yourself, you can go online , and find somebody in the DOC who can answer that question. Those are the networkers within the Diabetes Rebel Alliance.

[00:27:00] Susannah: And so he was able to jailbreak it. He hacked into the, into the CGM, turned out to not be very difficult. And he sent the data to his Apple watch. which meant that he could keep track of his kid's blood sugar during the day. Or at night he could set an alarm and just look at his own Apple watch and see how his child's blood sugar was doing.

[00:27:51] Susannah: to link together a continuous glucose monitor with an insulin pump using a microprocessor called a Raspberry Pi [00:28:00] and medically approved algorithms. And they invented a DIY open source artificial pancreas system. Wow. 10 years. Before 10 years and counting before the industry did. And here's where the story gets really interesting because there actually had been one other person who had done this Brian Maeslisch about a year before Dana and Scott had done it.

[00:28:54] Susannah: Born networker. She shared what she did online. And what's interesting is that the [00:29:00] FDA caught up to the patient led revolution because the arguments from the patients and the caregivers was basically, what's risky diabetes, living with diabetes is risky. Why shouldn't we have access to our own data?

[00:29:19] Susannah: make it easier.

[00:29:40] Damon: It doesn't make sense to have the data be locked up and only going to that destination when I'm the one who has to manage it every day, and I'm the one who has to be criticized for not staying in range when I don't have access to the data that you do. So that's really fascinating. And I love , these hacks that [00:30:00] people come up with.

[00:30:08] Susannah: I just wanna double down though on, on something that you and I have talked about, and that is, it's an example of a a, a lack of imagination.

[00:30:47] Susannah: And that really resonates with me in terms of the open data initiative that you and I worked on at scale in the federal government because there's resistance to this idea , that we should have full transparency for all [00:31:00] of the surveillance programs that the government does. And, and for all of the data that we collect about , the quality of, of hospitals , and nursing homes there's some hesitation about like, can people handle the truth?

[00:31:16] Damon: Well, and not to mention, they're living with the truth every day, right? They know, just because the data shows there's poor quality at a certain nursing facility, you don't think the patient knows that already? You know what I mean?

[00:31:46] Damon: It was interesting because you brought it home to your own experience. And basically, you're talking about, the notion of maybe a person who's reading the book, maybe being like you. You think you've got it all together in terms of your health. When you have a question, [00:32:00] you Google it, and the information you need generally pops up.

[00:32:25] Damon: 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. Tell me a little bit more about your personal experience in your Rebel Health journey.

[00:32:52] Susannah: And I thought that's for more desperate people. That's not for me. And what I found [00:33:00] out is that I had chosen an allergist who was using outdated testing procedures. I didn't know that I could drive an hour to Baltimore and see one of the world premier allergists the person who's, who's led amazing clinical trials.

[00:33:48] Susannah: I was able to get into the much, much better clinical practice. I was able to basically upskill to a point where I felt [00:34:00] so much more confident about sending this child to school and to camp, and now I'm happy to say to college. Where, they're managing their food allergies on their own. And it's very much thanks to the, the again, the upscaling that I was able to get from my peers, the peer parents in the DC area.

[00:34:53] Damon: But you know, many people have that white coat fear that won't allow them to challenge the person with [00:35:00] the M. D. Behind their name. They say, doctor's doctor and what they say goes. Yeah. And and An inability to connect with some of these online communities to network and just go with the flow as it is presented to them in health care can exacerbate, many health inequities.

[00:35:33] Susannah: Oh, absolutely. So first there have been radical health movements throughout the 20th century and we see peer to peer health care emerging when people are discriminated against or left out of the conversation in any way.

[00:36:22] Susannah: They actually had a data collection program where they recognized, That sickle cell anemia, which is much more prevalent in people of African descent, the federal government was not collecting data about the prevalence of sickle cell in the black community. And so the party did so. And by doing so they were able to throw a spotlight on this very serious disease and, and of course, fast forward, we now have some, awesome new CRISPR technology that, that is poised to eradicate sickle cell.

[00:37:24] Susannah: And. What I like to say is that's fine if you are comfortable with just staying on the conveyor belt of mainstream health care. But if you fall off, if you find yourself with an unusual illness, if you find yourself in a situation. Well, you're not getting treatment or, or you actually can't even get a diagnosis because you can't get anybody to listen to you about the symptoms that you're experiencing.

[00:38:40] Susannah: And, and can you tell me about what my case, why my case makes you think that I have that diagnosis and you can go on from there. It's very powerful. to have questions rather than statements.

[00:39:05] Damon: But tell me specifically what it is that's unique about this case that makes you think that that applies to me. I love that at that heart of America, that American heart association or at that heart. event, Heart Month event that I went to. One of the things that one of the cardiologists said on stage is when you go into the hospital and the doctor is telling you it's not your heart, it's indigestion.

[00:39:45] Susannah: I love that. Thank you.

[00:39:48] Damon: Well, Susannah, this has been incredible. I'd love to know, you spent so much time writing the book. I'm sure it's a relief to have it done and out there ingested by people who need to get this knowledge. I'm so proud of you for getting it [00:40:00] done. I know it's been a labor of love for quite a while.

[00:40:13] Susannah: Well, I love talking to startup founders. I'm always interested in talking to entrepreneurs, people with a great idea.

[00:40:44] Susannah: I want to be able to say yes. , and I have a wide range. and so my invitation to any listeners is to take a look at that. It's on my website on Susannah fox. com under patient led innovation. If your favorite company or organization isn't listed I'm very [00:41:00] findable online tag me , and tell me about your startup.

[00:41:07] Damon: I love it. For anybody who does want to find you online very quickly from this, how do people get in touch with you? Susannah?

[00:41:23] Damon: Really awesome. Well, thank you so much for being here with me, Suzanne. It was wonderful to see you. Like I said, proud of you in the book. The book is called Rebel Health for anybody who's interested. It's got some amazing knowledge in it, and I'm so proud of you for getting this done. This is really, really cool.