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

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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.

Her latest endeavor, the book, rebel health illuminating the [00:01:00] path to participatory medicine and capsulates her insights into the evolving landscape of healthcare through the narratives of the patient experience. Rebel health explores the 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 a rebel health. Susannah Fox.

[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.

[00:01:37] Susannah: I'm thrilled 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.

[00:01:47] Damon: And generally what you've been working on that has gotten you to this point of writing the book that we'll get to soon. So if you don't mind, let's get started. Would you just take us back a little bit? Tell me about your background as a researcher and how you [00:02:00] got into, health data and patient advocacy.

[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.

[00:02:24] Susannah: So I'm really a combination of these two people. And my brother's an engineer, my sister's an engineer. And then I came along the third child and studied anthropology. And

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

[00:02:39] Susannah: Right. I think my dad was really nervous that I would never find a job. He just didn't understand, how could you go to college and not get some kind of a technical degree, something useful.

[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.

[00:03:17] Susannah: For example, I worked at U. S. News and World Report. And actually before they caught us, I was on the web team that actually used all of the college rankings data that the magazine collects. And we flipped it so that people would have access to be able to re rank the colleges according to what's important to them on our website.

[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.

[00:04:06] Damon: That's amazing that, the U. S. News thing, you're right, is absolutely demonstrable of your career curiosity, but also recognizing the data is presented this way. But I also see an alternative value. If you flip it, as you said, just tell me a little bit about how you got into health care.

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

[00:04:26] Susannah: When the Pew Charitable Trust gave a grant to a group of us, a small group of researchers to start the Pew Internet and American Life Project. This was back in the year 2000 when only 50 percent of Americans had access to the internet.

[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.

[00:05:11] Susannah: And I got to write the first report on how the internet was. Changing health care. We did national telephone surveys back when people would actually answer the phone and answer surveys for us. And we talked to people about how they were using the Internet to, to interact with health care, to ask health care questions and That study came out, gosh, if you can believe it, I I turned in my final draft of that report and gave birth to my first child the next day.

[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.

[00:05:51] Susannah: Actual. Yeah. So I can really date my interest with, with the age of, of my oldest [00:06:00] child. so that report came out and, it made a huge splash. I didn't even know what a big deal it was that that report got cited in the journal of the American medical association, JAMA.

[00:06:11] Damon: And,

[00:06:11] Susannah: So anyway, it, it, it, I immediately saw that healthcare is an area that is in need of disruption. It is in need of democratization and the internet went ahead and did it. Whether anybody liked it or not, the internet was coming through. And the patients, survivors and caregivers who've been locked out of a lot of conversations started banding together, and it's been my privilege to spend time in those communities.

[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.

[00:07:13] Damon: Whereas now it's so commonly accepted that our data is just everywhere. People are analyzing every single click and I movement type keystroke that we make such that you don't have to do surveys anymore. They're just collecting it on you. And so the health information can be gleaned from our interactions with online websites and patient portals and all this other 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.

[00:07:42] Susannah: Absolutely. And I love, I love your, your bringing in of, of the potential for AI because once again, we can't make the mistake that's been made over and over in healthcare. And that is we, we need to include patients and survivors and caregivers in the design of these [00:08:00] tools because it's people with lived experience who are, are the ones who, who really know what they need.

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

[00:08:11] Damon: Yeah, that's exactly right. But the other thing that occurs to me, I've been doing some writing myself, we've talked about this, and I've been utilizing A.

[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.

[00:08:42] Damon: I'll get, four images on being a I, but when I put the same prompt together and all I do is change the word to black from white. I'll get one image and it goes from a realistic image to a very cartoony thing. And it was really disappointing to see that I've even, [00:09:00] created some prompts that ask for the the creation of an image that ends up being touted as a violation.

[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.

[00:09:33] Damon: I'm I'm black. So I'm going to speak as a black person about the challenge, but I'm sure there are other inherent biases. Another one that I'll bring up is. I went to an event for heart health month, and there was a woman on stage, clever innovator who has developed a device that is basically a bra for women that has a heart monitor device in, in sewn into it.

[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.

[00:10:22] Damon: So we've got these big challenges of the lack of data about different slices of human life being missing. And unfortunately, it's catching up to us because AI is pulling everything. And where there are gaps, we've got challenges. So.

[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.

[00:10:46] Susannah: And I'll say that what I'm really hopeful about is the use of, of AI to take a body of work or a set of clinical notes or images that it, that already exists to give it that [00:11:00] instantiation of someone's health record.

[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.

[00:11:23] Susannah: of clinical notes and imaging. And instead of asking a human or a team of humans to sort through all of that, that's the perfect job for AI where they can, feed it in. And it's just the facts. It's the facts of that person's case and that person's health history. And, and to me, that's a really good use today of AI in healthcare.

[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.

[00:12:04] Damon: And it was a wonderful time. , we were both part of the Obama administration. This is an innovative government that was looking to democratize health data that the agency itself and all of its affiliates had collected and curated from, , all of our scientific agencies and all of our surveillance.

[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.

[00:12:43] Susannah: Sure. Thank you. So for people who aren't aware of the office of the chief technology officer at HHS, where you and I served was started as the place inside the secretary's office, the secretary at HHS. To be , the office that looked at , and, [00:13:00] and spread the ideas of open government, open data and innovation.

[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.

[00:13:29] Susannah: And so at that time, when I came into the Obama administration I served for the last two years. of the administration as the CTO. I saw that there was some incredible work already going on. You Damon were running the open data initiative and, and there was already so much awesome work going on in terms of teaching federal workers how to think like entrepreneurs, we had a venture fund, all of this awesome work was going on, but I realized that there was one.

[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.

[00:14:25] Susannah: So I started the invent health initiative to shine a spotlight on the opportunity of patients, people living with lived experience, who have ideas about. If they or someone they love lives with some kind of physical disability, like, low dexterity, that they come up with amazing ideas , , that we in government could learn from.

[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.

[00:15:11] Damon: Yeah, it's absolutely right. I mean, you and I have both had caregiver roles for a variety of different. Family related issues and you absolutely do invent along the way. So why don't we get to the book? The book is called rebel health. I've been reading it and it's fantastic because provides these characterizations for various people's journeys through health.

[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.

[00:15:56] Damon: I'd love to know what was the genesis of rebel health for you.

[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.

[00:16:17] Susannah: I, I would join a community with permission. I would go to in person meetings. I would go into online communities because what I realized in the advice that I got from a mentor, Tom Ferguson, is that if you want to see the future, you should hang out with the artists and the hackers and the cowboys and the rebels of healthcare.

[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] Damon: And,

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

[00:16:58] Susannah: As frankly [00:17:00] outgoing as I was, and they didn't have this idea to go and, and talk directly to these, these rebels of healthcare. But then when I started getting invited into higher level conversations I, I worked at the Robert Wood Johnson foundation as their entrepreneur in residence. I worked at HHS.

[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.

[00:17:40] Susannah: And so. And they, some, some of them literally couldn't believe it when I would tell them stories about what patients were doing with data or what caregivers were inventing in terms of medical and assistive devices. And so I wrote this book. to introduce these two groups together, the, the [00:18:00] rebels of healthcare and, and what I lovingly call the suits of healthcare, the rebels in the suits need to know each other.

[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.

[00:18:35] Susannah: And that's why I came up with the four types of people that you'll meet in the revolution.

[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.

[00:19:06] Damon: Yeah, right. I don't know anything about this and I suddenly have to become an expert. You identify a networker, a solver, and a champion. Can you just go through what a seeker, networker, solver, and champion are for folks?

[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.

[00:19:26] Susannah: And I started to. to see patterns in how people react to a new diagnosis, how people react to a health setback. And the one way that people react is that if they're not getting the answers that they need, if they have symptoms that can't be explained, whatever , they, their, their needs aren't being met by the mainstream healthcare system.

[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.

[00:20:09] Susannah: They'll get on Facebook. book. They're in the comments on, on, on any social media platform. If, if they're always going to want to be in community, to learn in community. And when they find something that works, , they elevate it. They, they bring that. To the group. They're amazing at communication.

[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.

[00:20:53] Susannah: And that could be a medical device, like a continuous glucose monitor. That could be an assistive device. , if, [00:21:00] if something isn't working in their life, they will innovate or invent something that does work. Solvers also attack problems like that you might see in a, in a system. And so it's, , they they're systems thinkers. The fourth group really emerged from my interviews with seekers and networkers and solvers who were able to bring a product to market, or were able , to to get something to scale. Every single one of them could name a person who was able to give them funding, who was able to give them regulatory guidance, , who boosted them up somehow because that champion had access to mainstream resources.

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

[00:21:44] Damon: Yeah. Those are wonderful explanations. And like I said, I thought of some people that I just, immediately jumped out, came to my mind as a seeker. Like I said, you and me and anybody who ever has or has dealt with [00:22:00] our own or anybody else's health care condition.

[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

[00:22:09] Susannah: much a networker,

[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.

[00:22:26] Damon: Regina holiday, also an e patient advocate, Fred Trotter and Hugo Campos, who you feature in the book and in terms of champions, yourself. I thought, as CTO, you were clearly somebody in his position of holding policy information, access to data on healthdata. gov, et cetera, et cetera.

[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.

[00:23:08] Susannah: Well, the key here also is to say if, if, if to a listener, If this all sounds kind of exhausting,

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

[00:23:18] Susannah: okay. You don't have to take on all these roles. If you are facing a problem that a solver could help you with, but that's not your skill set, you can actually bring someone in who is a solver. The same goes for networkers.

[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.

[00:23:58] Susannah: And what I would wanna say [00:24:00] to them is, Hey, if you've solved a problem. Why don't you find a networker and, and give it to them, give that answer to them so that we all can benefit from whatever innovation you've come up with.

[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.

[00:24:36] Damon: So I'd love for you to say a little bit more about the interplay of all of these different personas around each other.

[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.

[00:24:54] Susannah: So, so people living with diabetes, particularly type one or [00:25:00] insulin requiring diabetes This looks to the outsider like a solved problem that you've got a diagnosis. You've got insulin and and in other treatments. And if you're really lucky, you have a continuous glucose monitor which helps you keep track of your blood sugar to make sure you don't go low or high.

[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.

[00:25:40] Susannah: How do I calculate the carbs in a meal? How do I make sure that, that I'm going to be safe if I go on vacation? There's a lot of these questions that people need to go online and, and, and they're able to go online to, to research. so that they can have the freedom to live. The other [00:26:00] thing that happened in the diabetes community is that as soon as they were able people started using social media platforms to gather together.

[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.

[00:26:31] Susannah: And , so One challenge is that the continuous glucose monitors traditionally, the data was locked up inside that device because they were designed, frankly, with doctors in mind. They weren't designed with patients in mind. And and then. There was a solver, John Kostic, who decided one day that he was tired of not having access to his four year old's CGM data.[00:27:00]

[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.

[00:27:25] Susannah: He posted this to Twitter. So here we have a solver who was a networker. who posted how he did it. It spread all throughout the world. It triggered a cascade of innovation in the diabetes community. Including and I'll just fast forward to the most radical wing of the Diabetes Rebel Alliance, Dana Lewis and Scott Librand and Ben West collaborated did.

[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.

[00:28:28] Susannah: But Brian is somebody who really wanted to, to color in the lines, not, not the rebel spirit. He took it straight to the FDA and said, what do you think? And the FDA said, like, we don't want patients hacking into the CGM and linking the insulin pump. So Brian didn't talk about it publicly. But then a year later Dana is a.

[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?

[00:29:18] Damon: Yeah, it actually gonna

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

[00:29:20] Damon: Yeah, what I heard in in these, hacks and innovations was that people recognized I'm going into the clinical visit where the data is going, which is max eight minutes with the doctor, but I'm living with any type one type two diabetes all of the other minutes of the day and the rest of my life.

[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.

[00:30:00] Damon: I'm not the one that created device. I would probably be a networker if I had to, parachute into one of these personas. Tell me more. It's an example.

[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.

[00:30:16] Susannah: It's a lack of understanding that, that patients have insights that companies can learn from. And it's it's also a privileging of. Security. Over usefulness. You know it that if we keep everything completely locked down, then that scene is safe. But what the diabetes rebel alliance has showed us is that's unsafe to keep the data locked down meant that we don't have access to it.

[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?

[00:31:12] Susannah: Well, yeah. People can't handle the truth. We need them to 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?

[00:31:26] Damon: Like, let's not pretend that we're protecting people from information that they're living with every single day anyway, right? So that's a, that's a really astute point. And I appreciate you underscoring that. I want to take you to the end of the book because there was a You have a quote in here that I wanted to touch on, really.

[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.

[00:32:03] Damon: If you're lucky, you already have a doctor you trust. But unfortunately, and I'm paraphrasing here, sometimes you realize that you don't have it all under control. It's easy to assume that you have the best available knowledge. When my child, this is you talking, when my child was diagnosed with life threatening food allergies, I thought we could handle it on our, on our own as a family.

[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.

[00:32:37] Susannah: Yeah, I, I have to admit that I was overconfident. I thought that, oh, I, I understand food allergy and, and all honestly, I had been studying peer-to-peer healthcare for years.

[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.

[00:33:17] Susannah: And thanks to a peer to peer group that's actually on some, some really old school technology. It's a And, and I only heard about it because my husband's friend at work, Julia Gordon told him, Oh, your child has food allergy. You should join this peer group that I'm part of. And it's through that peer group that I was able to educate myself about the laws around access to epinephrine.

[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.

[00:34:24] Damon: And, one of the things that comes to mind is one, the bravado that you had, like I'm in healthcare, I got this right. And we all do it, you think, so you act like, and then you realize you don't. But the other thing that I think is a little deeper challenge is. I focus a lot on health equity in my work and you and I are privileged to be in health care such that we recognize when something's going awry and we could say, well, that's not right.

[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.

[00:35:17] Damon: This what you talked about at the top, the democratization of health information of data is really powerful. And I wonder what you learned about it. Any health inequities that are distributed at throughout health care as you were writing this book.

[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.

[00:35:51] Susannah: So, I'm thinking here of how in the 1930s, people with substance use disorder who saw that there was really no [00:36:00] conversation, no treatment about this. They formed the peer led Alcoholics Anonymous, which then, is still successful today, is still a model for substance use disorder. I think about how history that that is often not brought forward, but really should be is how the Black Panther Party had community health services.

[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.

[00:36:58] Susannah: , and so you think about [00:37:00] where are people, where are people's needs not being met, whether because of discrimination, whether because of inequity in terms of access, , and you also think about it in terms of , what you were talking about in terms of the white coat syndrome of I was raised the doctor knows best and it's, it's my job to listen , and do what the doctor tells me to do.

[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.

[00:37:54] Susannah: One way to tap into power that you may not feel that you [00:38:00] have is by joining a peer community, finding other people like you who have. Been down that same path and can give you a map can, can give you the language that you need to describe your symptoms in a way that a clinician can hear them. And, and the thing that I always tell people is If, if you're nervous, if you are uncomfortable about challenging a doctor don't come in with statements, use your peer led community to form questions that you can ask and say, why do you think that?

[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.

[00:38:53] Damon: Yeah, that's a really good point. You're introducing your own personalization into your care. Don't [00:39:00] just blanket me in with what you know from the book you, read a long time ago and all of that.

[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.

[00:39:28] Damon: The question you should ask back is, could it be my heart? And this goes back to what you said, right? Ask the question. And when they say no, you respond with right. But could it be my heart? Make them think through why it's not. I thought that will stick with me forever.

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

[00:39:47] Damon: Yeah, it was amazing.

[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.

[00:40:02] Damon: So well done to you when you're not writing. Tell me what kinds of things you're working on. What, what's sparks your passion? What does Susannah do when she's not talking about rebel hell?

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

[00:40:20] Susannah: And I maintain a list on my website of. Patient led, survivor led, caregiver led organizations. I started it because I want to be able anytime a, an investor or health care company or a journalist asks me, really, are there organizations, are there companies that are led by, Patient survivors and caregivers.

[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.

[00:41:04] Susannah: That is meeting the need of, of patients and caregivers.

[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?

[00:41:13] Susannah: On Twitter, Susannah Fox on threads, Susannah, our Fox, my middle initial, and my website is just Susannah Fox. com.

[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.

[00:41:37] Damon: All right. You take care. All the best. Okay. Thanks. You do. All right. Bye bye.