You Say You Want a (Healthcare) Revolution?

Susannah Fox wants to take back healthcare for patients in her new book, Rebel Health | Plus from my archives: an interview with Eric Topol (The Atlantic); and "what I'm reading now"

Susannah Fox at a book launch and talk at Cure in New York City.

In this issue of FUTURES

Theme: The Health Rebel

• New Essay: You Say You Want a (Healthcare) Revolution? by David Ewing Duncan

• From my archives: Destroying Medicine to Rebuild It: Eric Topol on Patients Using Data, a book review and Q&A by David Ewing Duncan

• What I’m reading now, selected articles and essays for you to check out

This is Issue # 2 of my new column about the many possible futures that may unspool out from our present at a moment when innovations in technology, science, and health have a potential to do great good. At the same time humanity faces a host of existential challenges and threats, from climate change, a rise in anti-science, and increasing authoritarianism to seemingly endless cycles of hate and violence. What the future will look like depends on us and decisions we make in the present, which is what this column is all about.  

Today’s column is about a healthcare rebellion that’s slowly emerging that has patients seizing control of their own well-being, and a new book by a passionate patient advocate, Susannah Fox. She offers a frank, moving, and straight-forward guide for anyone out there who wants to join what she calls the rebel nation for healthcare.

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New Essay

You Say You Want a (Healthcare) Revolution?

Susannah Fox wants to take back healthcare for patients in her new book, Rebel Health

By David Ewing Duncan, March 8, 2024

In the spring of 2020, writer and producer Fiona Lowenstein came down with COVID-19, initially getting the usual symptoms that then didn’t all go away. As Susannah Fox recounts in her new book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care, Lowenstein responded to this personal health crisis by writing two articles for The New York Times that described the symptoms and loneliness of what became Long COVID well before the Centers for Disease Control and official medicine acknowledged it or physicians took it seriously.

The Times articles attracted an avalanche of response from other long-haul sufferers feeling isolated, traumatized, and ignored by their doctors. This prompted Lowenstein, already an activist and founder of a queer, feminist health collective called Body Politic, to launch an online support group. “A new radical health movement rolled toward mainstream recognition” writes Fox, “sparked in large part by media coverage of what patients were doing, beyond what establishment medicine had noticed.”     

This is the crux of the rebellion that Fox, a former Chief Technology Officer of the US Department of Health and Human Services, describes in her new book. A longtime researcher and advocate for how patients connect using the Internet and technology, Fox tells stories both harrowing and inspiring about patients and families grappling with often rare and debilitating diseases who find connection and often solutions by sharing with others. Often they do this by going around a health care system that is ponderous and infuriatingly slow to respond. (Fox is posting ongoing stories and descriptions of tech and healthcare on a LinkedIn series called “Wow! How? Health”).

A longtime warrior for patient rights, Fox invented the term “peer-to-peer healthcare” in a report she wrote in 2011 for the Pew Research Center. She joined Pew in 2000 after serving as an architect and editor of US News and World Report’s first website, leaving that job in part because she was pregnant and wanted a less stressful job to focus on her baby. At Pew she happened to be assigned the task of researching and writing about health and technology, a fortuitous accident that led her to discover something exciting that was then beginning to emerge: that patients previously isolated were finding each other via the Internet and sharing stories and treatments and what worked and what didn’t.

Twenty-plus years later, we’re all too aware of how the original promise of the Internet to connect people and to “democratize” information and access has at times been abused by bad actors and profit-driven big tech companies. The net can be a thicket of misinformation and click-bait, and worse. Yet those early aspirations remain and flourish, too, as Fox demonstrates by telling us how the net and other technologies—even old school tech like The New York Times—can be used for good.

Lord knows that we need a rebel movement in healthcare in the 2020s. The system is not only slow to respond to change and too often ignores diseases that don’t fit neatly into a very incomplete list of diagnoses, it is insane how much we spend on healthcare in the US compared to what we get. In 2022, Americans spent $12,500 per capita, while most industrialized Western countries and Japan spent less than half that amount.

What this buys us are health outcomes that score near the bottom among industrialized countries for too many diseases—including a ranking of #53 for newborn fatalities and #44 for life expectancy—in a system that also seems uncaring, expensive, and difficult to navigate. (For more on this check out the Future of Health report I recently helped to edit and write in the section titled: “Healthcare Economics”)

Susannah Fox wisely has chosen not to go down the rabbit hole of healthcare costs and outcomes in her book. She wants to focus on patients and their stories, although the larger dysfunction of the system hangs over her narrative. So does the tale of two cities aspect of a $5 trillion healthcare enterprise that is seeing technological and scientific innovations rapidly accelerating even as our system remains dysfunctional and slow to adopt and to make widely available new breakthroughs.

This includes the Internet itself, which has been around for a while, yet remains a grossly underutilized resource for mainstream medicine vis-à-vis patients. This despite a thriving digital health industry that is feverishly building apps and AI-driven systems for diagnoses, management of care, and much more that are often resisted by traditional medicine, a head-scratching disconnect that I do wish Fox had dipped into a bit more to help explain why.

Fox does leap into describing in detail what patient rebels are doing to help themselves and to connect with others as they try to understand and manage everything from diabetes and other auto-immune diseases to rare genetic disorders and Long COVID, and much more. Writing in a crisp, engaging style, she describes four types of patient go-getters, or “archetypes”—Seekers, Networkers, Solvers, and Champions.

In my interview with her below, she describes each one—which of course also describe different facets of human nature in how some people respond to crises. She also offers advice and tips to help patients feeling invisible in their condition to become visible.

A few days ago I interviewed Susannah Fox from her home in Washington, DC. I first asked her the deceptively simple, but often quite revealing question that I’m asking everyone for this column about the future:

What are you most excited about and most afraid of for the future?

Q&A: Susanna Fox

Here is our conversation edited for length and clarity.

What are you most excited about and most afraid of for the future?

I’ll start with what I’m most excited about, and that’s how radical health movements are able to change science and change healthcare. That’s why I'm very hopeful that the more we listen to the people who are experiencing the challenges that we're trying to solve, the faster we'll get to the solutions.

Tell me more about peer-to-peer healthcare, which you define as “connections between and among people and how the Internet accelerates this,” and how you see this changing healthcare.

Peer-to-peer healthcare is this concept of being able to collapse time and geography and to connect with each other that began in the early days of the Internet. It’s become bedrock for mental health, addiction recovery, substance use recovery, eating disorder recovery, and diabetes.

How did you start out working on this?

I first heard about this from an amazing radical doctor named Tom Ferguson who lived down in Austin, Texas. He was a radical because he believed that patients themselves should have access to all of the tools that they need. Tom became an advisor to us at Pew, and he said to me, "You cannot understand the future of healthcare unless you start hanging out with patients and survivors and caregivers, especially people with rare, life-changing diagnoses." So I did fieldwork with the National Organization of Rare Disorders that changed my life, talking with families who are facing the mysteries of a rare disease, and finding each other online.

Why did you write Rebel Health?

I wrote this book to help people step into their power as patient survivors and caregivers. After 20 years of fieldwork in patient communities, I realized that people respond to a challenge in different ways, and they need different skill sets to solve problems. So I discerned that there are four types of people that you'll meet in the revolution.

Seekers who go out on the hunt for information and don't give up. Sometimes they are angry, sometimes they're frustrated, whatever it is that’s the spark that makes them take action and becomes a flame that does not go out until they get answers.

Networkers are always on the lookout for what treatment they want to share with the people who share their condition. They gather resources and gather people around them, and they are able to disseminate the best stuff.

Solvers attack problems. If they see something that's not working the way it should be, they take it apart and put it back together again. And that could be an assistive device, that could be a medical device, or it could be a system.

Champions are people who have access to mainstream resources, and they see a patient-led or a caregiver-led initiative that needs a source of power that they have access to. Examples include funding, regulatory guidance, access to labs or manufacturing facilities, access to materials. Journalists can be champions because they have access to attention so that people will notice that this is a problem that needs to be solved.

Is part of what you're writing about just common sense or something that we already know—that we need to listen to patients?

It is and it isn't. Often when I talk to people about peer-to-peer healthcare, they say, "Oh, I know what you're talking about. That's Facebook." That seems obvious, but that’s only part of it. That’s where the networkers are, and sometimes they are so loud that they drown out the seekers and the solvers. I realized that there are so many patient advocates and caregivers who needed language to describe how they are problem solvers. I also wanted to talk to policymakers and healthcare executives and clinicians and say: " You need to look at these people as potential partners."

There also are new technologies around tracking a person’s health and fitness, and that test genetics and other data.

Definitely. That’s something else I wanted to talk about, how this whole space has gotten supercharged with the ability of people to do personal science with sensors and tracking, and by an ability to reengineer medical devices and invent new assistive devices. We have so many more tools now than we did even just 10 years ago.

Are you concerned that an over-dependence on the Internet and virtual worlds might cause us to miss something that’s very human when we physically interact?

Of course, although I'll point to the rare disease community who inspired me at first because they feel truly alone. They may not have anybody who lives in their city or their state or their region who has the same diagnosis. They have to use virtual tools to connect. But there are so many groups that also get together in person. They use technology to find each other, but then they get together in person to have this sense of community, like Alcoholics Anonymous, Narcotics Anonymous, a diabetes support group, a breast cancer support group.

Why is that so hard for people who are after all called “caregivers” to understand when a person with one of these conditions that they need connection and support? Is there a possible fifth category here—the empathizer?

There is a care gap in this country, in part because of the system that doesn’t allow enough time with caregivers. There also situations where a clinician wouldn't know what to say because they haven't experienced what the patient is going through. Peer-to-peer healthcare can help fill in that gap. This is another reason to help people self-organize to create research groups where we give them tools to gather data and analyze the data and present it to the mainstream healthcare world. That's what we saw with long COVID.

Who did you write this book for?

One group are the rebels, the patient survivors, and caregivers who are innovating outside of mainstream healthcare. The other group are the leaders of mainstream healthcare, clinicians, policymakers, executives who are going to see that it's a competitive advantage to work with the rebels of healthcare.

You do not talk much about the cost of healthcare or problems with the system, why?

That's would be a different book. This is a part of my optimism about the future that there is so much that someone can do at their kitchen table to change the outcome of their own health or the health of someone they love.

How can tech or tech people help?

There is this group of people that I really love who are the solvers, and a lot of them just love to tinker. I would love for more of them to come on in and help us in healthcare.

To me, what's also needed are solvers on the policy side to tinker with the policies and the system. Any chance of that happening?

A big part of my job when I was CTO at HHS was recruiting people like that to come and do a tour of duty in the government. And I've got some awesome stories of solvers that we were able to bring in and go work at the CDC to help them with their big data projects.

Are there instances where you just need to just be a rebel and man the ramparts to fight the system?

Yes, when it comes to access to our own data. Right now, many patients don’t have the right to se their own data, or it’s really hard to get. That' includes data from medical devices as well as electronic health record data. An example of patients demanding this is the Diabetes Rebel Alliance, the people who hacked into their own devices and created a DIY [Do It Yourself] open-source artificial pancreas.

How do you deal with data that’s hard for nonexperts to understand, or data that’s intentionally misleading, like what happened with COVID-19 vaccines?

One issue with this is the shortage of experts to help interpret data, although there are also people who would love to help you if only they knew how to find you. There is this possible future which includes expert peer communities helping people to navigate this torrential data stream that's coming at us.

Getting back to my first question, what is your greatest fear for the future?

There are so many fears. There are political fears, there are environmental fears, there are health fears. In the context of healthcare, I'm very worried about choice. I'm very worried about trans healthcare. I'm worried about anti-vaccine people. Basically, anything that's anti-science, which stops people from getting the access to the care that they need. On a broader demographic scale, I am worried about our looming caregiving crisis because I don't think that we are ready as a country for the demographic shift that's coming as baby boomers become frail. There are so many elder orphans who don't have a partner that they're living with, and that don't have children to help take care of them.

You have also mentioned access as a fear.

With all the incredible discovery and all the possibilities of new technologies and new drugs, I worry about access. I worry about access in terms of structural barriers like cost, and about access in terms of the political winds shifting and where you live. But I also see one solution to this is patients speaking up, collecting their own data, and forcing access because they’re not accepting the barriers to care.

What about access to empathy?

Yes, I worry about access to love, particularly with the elder orphans I was just talking about. How do we make love more visible so that we see the need for it and the absence of it? At the very end of the book, I tell my own story because I was a caregiver for an elder orphan, and I discovered a resource that I absolutely love, and this is Rajiv Mehta's Atlas of Care. His tool called the Care Map is incredible because it makes visible a network that surrounds a loved one, including an elder orphan who would appear to be very alone, but actually has a web of love that surrounds them.

To watch an interview with Susannah Fox, check out her recent appearance at Cure in New York City. I’m the Creative Director of Cure working with a great team to put on unique health and life science events in the brand-new Cure building near Union Square. Fox was interviewed on February 20, 2024, by Cure CEO Seema Kumar.

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From My Archives, The Atlantic

Destroying Medicine to Rebuild It: Eric Topol on Patients Using Data

In his new book, the cardiologist and director of the Scripps Translational Science Institute is on a tear to transform health using the latest tech

By David Ewing Duncan, for The Atlantic, March 12, 2012

This is a review and Q&A with the famed cardiologist and digital health advocate who had just released a new book: The Creative Destruction of Medicine: How the Digital Revolution Will Create Better Health Care (Basic Books)

The emergency announcement on the transcontinental flight was terse and urgent: "Is there a doctor on board?" A passenger in distress was feeling intense pressure in his chest.

Eric Topol strode down the aisle to examine the passenger to see if he was having a heart attack, a diagnosis that normally would be tough at 35,000 feet. But Topol was armed with a prototype device that can take a person's electrocardiogram (ECG) using a smartphone. The director of the Scripps Translational Science Institute near San Diego, he had just demonstrated how it worked during a lecture in Washington, D.C.

"It's a case that fits over your iPhone with two built-in sensors connected to an app," says Topol, showing me the device, made by Oklahoma City-based AliveCor. "You put your fingers on the sensors, or put them up to your chest, and it works like an ECG that you read in real-time on your phone."

"So I put the sensors right on the man's chest," he continues, "and I could tell he was having a heart attack. I said to the pilot: 'Get this guy off the plane, this is the real deal.' And they made an emergency landing. My understanding is he did very well."

I'm now sitting with Topol in his office just above the Pacific Ocean in La Jolla, California, as the sun sets and hang gliders soar over an impossibly idyllic beach. He has turned on his AliveCor sensor and tells me to press my fingers on the two slim metal sensors on the back of his phone. Immediately my pulse hops across the screen, settling in at a normal 70 beats per minute.

"I use it when I see patients," he says. "I don't do a formal cardiogram anymore. If you had some heart arrhythmia or you were prone to dizziness, lightheadedness, or pounding -- we'd give you one of these, you'd put it on your phone." He tells me the device has yet to be approved by the Food and Drug Administration (FDA) in the United States, but it's about to be approved in Europe.

"This can't come fast enough," he says with intensity, a tall, lean man who is big like a professional basketball player is big. His face is narrow with the perpetual half-smile of a physician wanting to convey both good humor and authority. "This device is ready right now to save people in ways that has never been possible before."

Topol speaks with the same ardor and edge that led him in 2004 to publicly challenge drug giant Merck about the safety of their then-multi-billion dollar pain drug, Vioxx. Vexed by their refusal to acknowledge a potentially fatal side effect of the drug for patients with heart disease, Topol also went head-to-head with the leadership of the Cleveland Clinic, where he then served as chair of the department of cardiology. The flap led to Merck pulling Vioxx from the market, and to Topol's departure from Cleveland Clinic.

Now Eric Topol has now written a book that calls for the "creative destruction" of the current medical paradigm, which he believes has failed to keep up with the digitized world of interactivity, social media, computers, apps, and advanced engineering and electronics. In the book, written in that same half-smile style of good humor and authority, Topol blasts current-day medicine as being archaic and wasteful, making his case with a compelling blend of statistics, anecdotes, and barbs aimed at health care's Ancien Régime.

Read the rest of this story here.

What I’m Reading Now

Below are links to articles and essays I recommend you read in the realms of life sciences, healthcare, AI, and the future.

Note: Some of these publications have paywalls, which is a great way to support excellent journalism.

The Atlantic: The Universe as We Understand It May Be Impossible, A new conjecture in physics challenges the leading “theory of everything, by Natalie Wolchover

MIT Technology Review: Medical microrobots that can travel inside your body are (still) on their way, Microrobots released into the body could bust up clots, deliver cancer drugs, and even guide listless sperm to their target, by Cassandra Willyard

Wired: They Had PTSD. A Psychedelic Called Ibogaine Helped Them Get Better, Ibogaine, a plant-based psychoactive drug, drastically reduced symptoms of depression and PTSD in veterans with traumatic brain injuries, by Emily Mullin

Reuters: More Than A Billion People Worldwide Are Obese, WHO Study Finds 
It will take more than GLP-1s to address the global obesity crisis, by Jennifer Rigby

Nature: Trump versus Biden: what the rematch could mean for three key science issues, depending on the winner of November’s election, researchers anticipate two completely different paths ahead for the environment, public health and more, by Jeff Tollefson, Natasha Gilbert, Max Kozlov & Mariana Lenharo

MIT Technology Review: The Biggest Questions: Is it possible to really understand someone else’s mind? How we think, feel and experience the world is a mystery to everyone but us. But technology may be starting to help us understand the minds of others, by Grace Huckins

Proto.Life: Renee Wegrzyn plans to level up US health with ARPA-H, as head of the government’s new federal agency, she’s attacking a wide range of problems from the molecular to the societal, by Jane Metcalfe

The London Times, Lab-Grown Cells Planted Under Skin Offer Hope for Diabetes, Scientists are developing ways to transplant insulin-producing cells into the forearms of patients with type 1 diabetes, by Rhys Blakely

MIT Technology Review: Nobody knows how AI works, It’s still early days for our understanding of AI, so expect more glitches and fails as it becomes a part of real-world products, by Melissa Heikkilä

Newsweek, We're Bringing the Woolly Mammoth Back to Life, by Ben Lamm and Eriona Hysolli (Note: this article is written by the CEO and Head of Biological Sciences at Colossal Biosciences, a company working to restore mammoths)

Wired: This Is What Your Brain Does When You’re Not Doing Anything, When your mind is wandering, your brain’s “default mode” network is active. Its discovery 20 years ago inspired a raft of research into networks of brain regions and how they interact with each other, by Nora Bradford

Strategic News Service: The Future of AI: Pattern Discovery, Explanable AI, and Ethical AI, At a time when the world has gone gaga over a piece of software that does little more than reflect our language, it is worth asking what the next 10 years of AI might look like, long after the love affair – and pendular blowback – are over, by Mark Anderson

Proto.Life: The dark roast genome of coffee, Italy has cracked the coffee code and assembled a complete genome for arabica coffee—something they say could allow for the creation of new disease resistant and more flavorful varieties. Java lovers everywhere, rejoice (description in Proto.Life of a new study in Nature Communications)

That’s it! Thanks for reading.