Rebel Health on The Nocturnists

Today is the one-year anniversary of the publication of my book, Rebel Health. To celebrate, I am inviting you to listen to my favorite conversation about why I wrote it and what lessons we can all draw from the patient-led revolution.

Emily Silverman, MD, is the host of The Nocturnists. She suggested that I start the episode by reading one of the most personal stories in the book about my experience as a caregiver and how peer health advice helped me navigate.

Here’s a tidbit I haven’t shared widely. That story was not in the manuscript I originally turned in to MIT Press. But when I found out that the Press would provide only feedback from peer reviewers and a copy editor, not a top editor, I swung into action. My friend Barbara Spindel, a talented writer and editor, agreed to take it on as a rush project. (When I told my husband I was nervous to be sending my manuscript to our smartest friend he replied, “You should be.”) Spindel provided elegant solutions to awkward phrasing, smoothed the rough edges, and tried to help me detox from my favorite punctuation mark: the colon. But her most important contribution was asking why my own story was missing from the book. She suggested I add a whole new last chapter about being a caregiver for family members and tie it into the Rebel Health framework. I did and it made the book whole, like the last big puzzle piece clicking into place.

In the excerpt below, I skip my reading and go straight to the conversation:

Emily Silverman: I am here with Susannah Fox. Susannah, thank you for coming on the show. 

Susannah Fox: It’s a pleasure. 

Silverman: So Susannah, in this book, you document patient-led advances in care, many of these patients operating on the margins of the mainstream medical system. This can be anything from inventing hardware, medical devices, tinkering in their home, inventing software algorithms; it could be something like building support groups or communities. It’s everything. It’s hard skills, it’s soft skills, it’s people, it’s technology, and I had such a blast just tearing through this book and hearing all of the stories and anecdotes that you put together from, what you write is, more than twenty years of interviews and surveys of patients, survivors, caregivers. Tell us how you came to this work. Was it related to a personal family issue? Or did you get interested some other way? How did this all get started for you?

Fox: I was lucky enough to jump through the window of opportunity that the internet presented in my twenties. I learned how to build websites, and I got to work with a lot of the pioneers of that early web, and frankly, I fell in love with the democratization of access to information and data that I saw back in the 90’s, when dinosaurs roamed the internet. When I switched gears and became a researcher, my assignment was to look for areas of American society that were being deeply changed by technology. That first year I looked at banking, I looked at privacy and security, and I looked at health care. I fell in love with health care. This amazing opportunity for people to have access to the information that had been previously locked up and kept out of reach, and crucially, the opportunity for people to have access to each other. My mentor, Tom Ferguson, gave me the advice to not stay in my office and ask people questions from on high, but to actually get out into communities and learn about how people were using technology to pursue health.

Silverman: You talked about how you got into this through the internet and technology, but the idea of patient-driven movements in health is not new. There are many examples across history of this happening. You mentioned in the book AA, Alcoholics Anonymous, you mentioned La Leche League with breastfeeding. Obviously, the ACT UP movement with HIV was huge and incredibly influential. Tell us about these pre-internet movements and how they lay the groundwork for some of the things that are happening now.

Fox: Something that I noticed in my field work is that when someone falls off the conveyor belt of mainstream healthcare, they have a couple of choices. They could lie there on the floor and give up, or they could stand up and try to find a way out. If they are able to gather together with other people who feel invisible or are being ignored, if their issues are not being addressed by mainstream healthcare, then they gather together to try to navigate toward health. And in the age of the internet, we see people doing that online, but this is human behavior that has been going on since the dawn of time, I’m quite sure. I decided to put in my book a timeline that was essentially the 20th century. I found examples of what I call peer to peer health care, this idea of people connecting to try to solve a problem together. I found an example in every decade, starting in the 1930s with Alcoholics Anonymous, on through the 1990s with ACT UP. And what was amazing to see, once I started looking, were echoes of what I’m seeing today, even back then. People who were being ignored because what they were living with was stigmatized, like alcohol use disorder or because of racism. The Black Panther Party saw that no one was tracking sickle cell anemia, so they began a community-led data registry in the 1970s. We are seeing that kind of work happening today in communities that are outside the mainstream. They know that they have a problem that needs to be solved, and so they are collecting data to solve it.

Silverman: There are so many great examples of how this is happening in the internet age and forward, and I want to start with some of these examples around hardware. I was reading your book and noticing a pattern. One of the stories that you told was about somebody with Parkinson’s disease posting online this problem, which was that the Parkinson’s pills were too small and they kept falling and it was difficult to handle them, especially with the tremor of Parkinson’s. There was another person, similarly, who had diabetes and required a blood glucose monitor and the alarm that was supposed to go off in the middle of the night to wake them up if their blood glucose was too low, was not loud enough. They were a really deep sleeper, and they were terrified that the alarm would go off, they wouldn’t hear it, and then they would die in their sleep. And in both of these examples, these patients attempted to contact the powers that be, I guess you could say. They went to the blood glucose monitor company and said, “Hey, have you thought about an alarm that’s louder?”, and in the case of the Parkinson’s pills, I think there was even an attempt to ask the pharmaceutical company like, “Hey, what do you think about a bigger pill?” And you would think that these companies would respond and say, “Oh, my god, what a great insight from one of our end users. Let’s respond and give the people what they want.” But no, that’s not what happened. In both cases, they were dismissed, ignored and told to go away and shut up. Explain why that happens and how you think about that.

Fox: There are many broken places in our healthcare system, and one of those that has been identified by the patient-led revolution is that there is no intake valve at most medical device companies and pharmaceutical companies for patient input, and that is because, historically, these companies have not really seen patients as their customers. They see the prescribing clinician as their customer, so they didn’t have a way to hear what these patients were trying to tell them. They missed out on these wonderful product improvement ideas. And by the way, these are ideas that would make the product safer and more effective.

Silverman: You wrote in the book, “If someone’s questions are not visible and interesting to scientists, then doctors are not likely to have any treatments to offer.” So in your mind, is it a simple issue of distortions in the market? Like you said, the client or the customer isn’t the patient, it’s the doctor or it’s the pharmacy benefit manager or whoever is deciding how these materials are getting shuttled through an extremely complicated web of businesses where the incentives are all out of whack. Is there a movement to shift that? So that companies are actually designing things for patients, for end users, or are we just too stuck in that web of distorted incentives that people are going to continue to have to operate on the margins, and these big companies aren’t really going to want to hear what patients have to say?

Fox: Sometimes I think about that question and it feels too big to think about all the ways that our systems feel rigged against us. And then I think about the work of one patient group, or even sometimes one caregiver or patient who raises their hand and says, I have an idea. And when we think about why a pharmaceutical company, for example, is not focusing on a certain condition or disease, it might be because the market is too small. That’s certainly true in rare disease. And therefore it’s often up to a rare disease community to begin the work and again, create a community-led data registry to prove that there is a market for this, that, hey if you can actually keep our kids alive, then they will be a worthy market for investment, just to put it in frankly capitalistic terms. There are other times that people at government agencies and in companies are just trying to execute against their current agenda. It’s not their job to innovate; it’s their job to deliver this product. It’s their job to deliver that service, and they don’t have time to think about necessarily, how to make it better. I saw that in my own service at the US Department of Health and Human Services, that it was often really easy to get someone at the top to pay attention to innovation, because frankly, it’s their job to be visionary, and it was often easy to get the attention of a front line healthcare worker because they’re close to the patient. They’re at the bedside. What’s really, really tough is to get the attention of the people who control the budget or the people who are more in control of the workforce. And one reason I wrote my book was to give people language to describe the value of what outside innovators can bring to these conversations that actually really would have to do with the bottom line and with the delivery of care.

That’s the end of the excerpt, but don’t stop now! Listen to the whole episode on YouTube, Spotify, or wherever you get your podcasts. And please let me know if the episode sparks ideas or questions. Comments are open.

Image: The Nocturnists logo.