A scholar of the patient ‘revolution’ tracks the arc from powerlessness to influence

At the end of each chapter in “Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care,” there’s a box. It summarizes the chapter, distilling what a reader just encountered into easy-to-digest bullet points. The author, Susannah Fox, admits she stole that idea from “The Long Covid Survival Guide,” which was written by patients for patients.

“One of the challenges with chronic illness and being exhausted is that you might have actually just forgotten what you just read,” Fox told STAT.

That small gesture — a snapshot of information in an easy-to-read format — is in itself a product of the patient-led movements Fox studies and writes about in her book, which will be published by MIT Press on Feb. 13.

But “Rebel Health” also taps into the knowledge that Fox has accumulated over decades of studying online patient communities. Her resumé reads as an eclectic combination of high-end roles, from former Chief Technology Officer for the Department of Health and Human Services under the Obama Administration, to an entrepreneur-in-residence at the Robert Wood Johnson Foundation, and directing the health portfolio at the Pew Research Center’s Internet Project. But the throughline has always been the people leveraging technology to get some answers.

STAT spoke to Fox about her years of researching patient forums, the historical roots of patient-led innovation, her new book, and what people in private industry or government should be doing to leverage the wisdom of patient communities and solve unmet health needs.

This interview has been edited for brevity and clarity.

When you decided to start tracking online patient communities 20 or so years ago, what did your day-to-day work look like?

When dinosaurs roamed the internet, people used email to create community. The list owners were like the mayors of these communities that they ran. Another technology that was used back then was something called a bulletin board service, or BBS. A really vibrant one was hosted at Massachusetts General Hospital. It was called BrainTalk. A neurologist noticed that people were arriving early for their appointments so that they could talk to each other. Because otherwise, they didn’t have anybody who was also experiencing seizure disorder or brain trauma. And so he said, “Well, wait. We could probably do something with this new technology that’s emerging.”

What I would do as a researcher is ask the permission of the leader of a community, whether it was OK for me to ask them to post a link to a survey. I was looking for short essay questions and then I would follow up with people to do phone interviews.

I mean, I’m looking over at my notebooks. I have the short answer essays from, like, 2002.

Wow. You’re very organized.

[Laughs] I am very organized. Thank you. I would print out the answers and read them. And I often had to do that work at home because I would, frankly, spend a lot of time weeping. Because this is the work that we do when we ask to enter into these conversations with people who are going through tough times, and ask them to share how they’re doing, how they’re doing the work that they’re doing. It’s not just about technology; it’s about humanity.

Were you always drawn to growing communities?

I am personally, naturally, a networker (to use the lexicon of the Rebel Health Alliance). When I worked at U.S. News and World Report and helped them start their website, it was immediately apparent how important it was to people to be able to connect with each other, to connect with data and information. And to connect with each other.

It seems you’ve sort of been able to predict the future, or at least identify early the desires that would lead to the birth of social media, patient blogs, and many other online communities. When did you realize for yourself that these “rebel patients” were shaping health in unseen or unacknowledged ways?

It was not until talking with people who were undiagnosed or living with something so rare that unless they went online, they were not likely to ever meet another person who had this condition, much less find any kind of a path toward treatment. That’s when I saw the importance of connecting online for support and information exchange, but also to solve problems. It was the rare disease communities that were the first to be talking about genetic testing, for example, and the pooling of data. That was more than 10 years before the rest of health care was talking about those issues.

Why was this worth writing a book about?

I feel a sense of responsibility for all of the stories that have been shared with me over the years. People trusted me with their stories. People trusted me to be a good steward of the communities that they allowed me into. And I also saw that people at the highest levels of government, as well as in the C-suite of health care, have not had the privilege that I’ve had of spending so much time with patients, survivors and caregivers. And I owe it to both of these groups to introduce them to each other. I also feel like I want to help everyone step into their power as patients and as survivors and caregivers. The people that I’ve spent time with in my field work are likely to be people who have been backed into a corner and come out fighting. There are [also] so many people who have been backed into a corner and are still there.

The book opens with an online group that hacked into their continuous glucose monitors and freed the data, which is a very cool story. Can you share more examples of “rebel health” in action?

The Diabetes Rebel Alliance is one of my favorites to talk about because they represent the full stack of the seeker, networker, solver, champion archetypes all working together to create change. I love talking about them also because they also represent a group of people that have found purchase in policy circles.

Through the work that I did in looking across the whole landscape, I found solvers and inventors who had created something useful that they actually didn’t necessarily want to create a company around. They didn’t necessarily want to patent the invention. They just wanted to solve the problem and move on.

One view of this is that people’s needs are not being met by the health care system. But there’s also this optimistic, curious tone throughout your writing. You say, “This will be a revolution you want to be a part of,” and focus on people’s ingenuity and the strength of community. Where do you fall on the spectrum from optimism to pessimism?

I’m naturally an optimist. I do believe that technology, in general, brings good things to individuals and to health care. Having worked at the highest levels of government, it was very interesting to see health care and change conducted at scale. When you think about health care, it is a massive industry. Government is a massive sector. And when you look at how these two forces can combine, you see that change needs to happen slowly and carefully. It is the opposite of, “Move fast and break things.”

The experience of working at HHS gave me a tempered optimism. There are some things that can happen quickly at the individual level, which is why I’m so excited about the possibility of the patient-led revolution being led by people at the kitchen table, and how people can take some of these lessons home and create change immediately. And that’s tempered by the understanding that some of these changes will be at the national level and will require policy changes.

You mentioned in the book an example I had never read about, which was the sickle cell efforts of the Black Panther Party, which resulted in at-home tests for sickle cell and money to be allocated for research. All these years later, we’re seeing some fruit come to bear with new CRISPR therapies. What does the usual life cycle of a grassroots, patient-led movement look like? What does it take to go from zero attention (neglected disease) to the mainstream?

I loved finding the work [historian] Alondra Nelson did to bring forward this history of the Black Panther Party’s foray into community health and peer-led science. Thinking about the arc and trajectory of how a community could go from, “No one is solving this for us, the questions that we’re asking are not being answered, we are not even visible to the mainstream or we are being shut out of care.” How you get from that to a point where you and your community are getting your needs met can take a very circuitous path.

Something that I became very clear about as I interviewed people and as I looked at the history of the patient-led movements: the closer we get to the bedside, the more we involve people who are living with the challenges, the faster progress we will make toward a treatment or an invention or an innovation that will address those needs.

I’m thinking of examples where there was one extraordinary person who said, I’m going to make a change, I’m going to start an organization and I’m going to get the ear of Congress. Here I’m thinking about Fran Visco and the National Breast Cancer Coalition. That’s a trajectory that I think a lot of people have tried to replicate for their own condition.

And then you think about the Diabetes Rebel Alliance, where people were able to essentially create an at-home, do-it-yourself, open source, artificial pancreas system outside the view of any major funding. They were able to eventually get the attention of device makers who are now responding to the demand that patients and caregivers were making in such a way that it couldn’t be ignored any longer.

In reading “Rebel Health,” I couldn’t help but think about astroturfing, or the creation of patient communities by drugmakers or other companies that primarily want to sell a product. What do you make of that phenomenon?

Since I live in D.C., I should be really careful about how I talk about lobbyists and the government and pharmaceutical companies. To me, any attempt to organize the patient voice is a good thing, because when you bring people together to talk about the problems and challenges that they have, they will benefit from having their stories told and having their voices heard and meeting other patients who share the same condition or the same challenge — that just-in-time-someone-like-you that people crave.

Telling the difference between an authentic patient voice and an AstroTurf patient voice is a challenge that we need everyone to undertake. So we need to be careful about who is speaking for whom and by what authority they are gaining that platform and gaining that voice, in the same way that we need to be careful about misinformation. Who is the source of the facts that you’re sharing?

Has the pandemic or the emergence of long Covid illuminated or challenged any of your notions of what peer-to-peer health could be?

When the long Covid community emerged, it actually echoed the communities that I saw even back when it was bulletin board systems and email listservs. It had the same flavor and personality. It’s just that it happened more quickly, and it gained a larger following than people had seen before because this was a worldwide phenomenon and such an existential threat to so many people. The velocity with which they gained followers and clout was amazing. The idea that they were able to field research that then got the attention of NIH and the WHO within a year of forming is pretty extraordinary.

What should people who work in industry or for regulatory agencies be doing in order to take advantage of this opportunity?

They should stay aware in their working lives that there are people who are using their products and services, who have ideas about how to make them better. Not only should they be looking for ways to bring in patient experiences to improve their services, but entrepreneurs and investors should be on the lookout for the issues where people’s needs are not being met and they’re currently not visible to mainstream health care. That is an area where there is a lot of suffering and a lot of opportunity.

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