“His doctors were stumped. Then he took over.”

How might we empower people to participate in research about their own diseases or conditions?

Which models work best for organizations solving medical mysteries or improving care for those living with rare conditions?

These are two of the questions raised by a New York Times story today: “His doctors were stumped. Then he took over,” by Katie Thomas about David Fajgenbaum, MD, and his quest to solve the mystery of Castleman disease.

New York Times Sunday Business story on Feb. 5, 2017: Doctor, Cure Thyself

Here is the section that jumped out at me:

In medical research, discoveries come slowly and take twists and turns that no one saw coming. Seasoned researchers have learned to rein in their optimism and to know that true breakthroughs can take years, if not decades, to realize. Not Dr. Fajgenbaum.

“I almost wish that every disease had a David to be a part of the charge,” said Dr. Mary Jo Lechowicz, a professor at the Emory University School of Medicine, who has studied Castleman disease and serves on the network’s advisory board.

Dr. Fajgenbaum’s single-minded mission to take on his own disease is also typical of the rare-disease world, said Max Bronstein, the chief advocacy and science policy officer at the EveryLife Foundation for Rare Diseases in Novato, Calif.

“A lot of mom-and-pop patient organizations emerge to take on these huge challenges in rare diseases,” he said. “I don’t think there’s one correct model for each disease; there’s been so many different approaches.”

Who does David remind you of? That’s the first question that I’d love to see discussed in the comments below. The people who sprang to my mind:

Again, let’s discuss: How might we empower more people to become active, expert participants in research about their (or a loved one’s) disease or condition? What are the factors that lead to someone’s empowerment?

The extra advantage that David has, as pointed out in the story, is his MD and affiliation with Penn. An interesting study might be to show the differences between organizations with medical professionals leading it vs. those with the “honorary PhD” that rare disease patients and caregivers often earn.

Another aspect I’d love to hear more perspectives on: The relative advantages of the different models of organizations. Three models comes to my mind: The “mom-and-pop” nonprofit vs. those sited at an academic institution vs. one that is corporate-backed, for example. Alternatively: Models for change also take different paths, such as community-building vs. data- or specimen-collection as the primary focus.

By the way, if you are new to these questions: Welcome! Some background:

Participatory Medicine is a model of cooperative health care that seeks to achieve active involvement by patients, professionals, caregivers, and others across the continuum of care on all issues related to an individual’s health. Participatory medicine is an ethical approach to care that also holds promise to improve outcomes, reduce medical errors, increase patient satisfaction and improve the cost of care.

If you’re ready to dive in, I’m sure there are other questions to discuss beyond the ones I list above. Please join the conversation on Medium or post a comment below.

Quantified Self Public Health

Quantified Self Public Health is back! 150+ health geeks of many stripes will gather on Thursday, May 14, in San Diego to discuss how access to personal data could benefit individuals and society.

It is an invite-only meeting (sorry!) but filled with voracious documentarians like Joyce Lee (read her Storify from last year) and, well, me (read my round-up post, which also links to others’ blogs). Follow the tweets on the #QSPH hashtag, too.

Observations and conclusions from last year’s QSPH event were captured in an in-depth report (PDF) and in a series of videos. Here is one of my favorites: Ian Eslick’s talk on the role of personal experimentation in the medical and scientific process:

This year it will be my privilege to interview Don Norman, a design pioneer, on stage.

To prepare, I’ve been reading sections of his books, The Design of Everyday Things and Emotional Design, and watching talks like this one:

I was struck by three themes of Norman’s approach:

1) Solve the correct problem.

My reaction: Boy, does health care need to grok this point. I can’t wait to ask him how to recognize when you’ve dug deep enough into the roots — and what tools to use to get there.

2) Pleasant, attractive things work better.

Reminds me of Michael Graves’s tart review of his hospital room: “I can’t die here. It’s too ugly.” And then he went on to make hospital rooms more beautiful and functional.

3) There is no substitute for direct observation of and interaction with the people who will be using the product.

Yes! I couldn’t agree more. Participatory research *must* come to health care.

Read the full quote from Chapter 6 of The Design of Everyday Things, and, as a thought experiment, substitute “natives” for “patients”:


This point reminds me of conversations I’ve had with people who design communications for HIV clinical trials. They need to use “one voice with many inflections” — that is, one set of facts, but tailored to the population they are targeting, such as sex workers in Thailand vs. Peru.

Switching gears…

A key element of the QSPH meeting is that it will be populated by toolmakers and tinkerers. People who make and hack their way to insights about health. So I’m also reading Mark Hatch’s book, The Maker Movement Manifesto.Book cover: The Maker Movement Manifesto

One of my recent obsessions is the health innovation that is happening at home — the hacks, tips, and tricks that regular people invent to make their lives better. Some are simple, like using a baker’s spatula to turn a large person in bed or sticking a pen through a tennis ball so someone with low dexterity can write. Some are more complicated, like the Do-It-Yourself-Pancreas-System or the Auvi-Q epinephrine injector (both created by people living with the conditions being addressed).

How might we harness the energy of all the people who are making a way out of no way, every day, in health care (that is, patients and their loved ones)? How might we empower them with data and resources? How might we learn from them, and them from us?

Please let me know if you have a question for Don Norman. I know our time will go very quickly, but I want to squeeze as much as I can into the conversation!

How did we get here? And where are we going?

Video of my talk in Sweden is now online (skip to minute 7 unless you speak Swedish):

It’s a comprehensive summary of my research so far, as well as an argument for listening to patients and caregivers as we move forward into the future.

The Vasa, which sank on its maiden voyage in 1628I opened with an example that was inspired by a visit to the Vasa museum in Stockholm and the seafaring history of the island of Gotland, where the meeting was held:

For hundreds of years, sailors on long sea voyages suffered from bleeding gums and wounds that would not heal.  The disease is called scurvy in English – skörbjugg in Swedish. In 1601, a sea captain in England conducted an experiment using 4 ships. One ship’s sailors were had lemon juice added to their diets, 3 other ships did not. The sailors who got the lemon juice were much less likely to get scurvy. This was confirmed in further experiments throughout the 17th and 18th centuries, but it was not until 1795 that the British Navy started using citrus juice on all their ships and wiped out scurvy among their sailors.

200 years between discovery and widespread adoption! Why? One reason is that the people affected by the disease had no access to information about the cure and, even if they did, they had little control over what food was sent on the ships where they worked. It was an economic and strategic decision, finally, by leaders, to add citrus fruit to sailors’ diets and improve or save their lives.

Keep this in mind as I describe more recent history. Who has access to the information? Who is experimenting with cures and innovations that might change the world?

I’d love to hear what people think of the ideas and examples I lay out in the talk — the Cystic Fibrosis Foundation, PatientsLikeMe, the C3N Project, and others. Please share your thoughts in the comments!

Quantified Self Public Health Symposium

On April 3, I was part of  a symposium organized by Bryan Sivak, CTO, U.S. Department of Health and Human Services; Larry Smarr, Director, Calit2; and Gary Wolf, Director, Quantified Self Labs, where I presented the Pew Research Center’s findings on tracking for health. I uploaded my remarks in a separate post — this one is more of a “notes and impressions” download. Continue reading

Put down the clipboard and listen

Here are the remarks I prepared for the Feb. 6, 2014, Engage & Empower Me class at Stanford Medical School. It’s a long post, so if you’d prefer to zone out, you can watch the video.

In thinking about this class, I thought a good framing question for tonight is: How does change happen?

  • How do political systems change?
  • How do cultural practices change?
  • How do business practices change?

And, more powerfully: How do you recognize when change is happening so you can surf the wave? Or even guide it and be part of team leading the change? Continue reading

Stanford Medicine X: Participatory research

Brett Alder and I spoke last night at Stanford Medical School’s Engage & Empower Me class:

Today is a travel day for me, back to the East Coast, so any comments posted may wait in the queue — but please let me know what you think! I’ll post more about this event when I’m home, including links to the studies and resources I cited. Some are listed on this Storify: Participatory Research. And check the tweets, tagged with #medx.


A simcha, not a class, on participatory research

When Larry Chu, the executive producer of Stanford Medicine X, asked me to lead a “master class” at the 2013 meeting, I thought, “No, I’m still a student, not a master!” But I took a deep breath and thought about what I love best about my work, what I feel compelled to share with my colleagues. It is the principle that researchers should “listen, more than ask” and respect the context of people’s lives as we seek to learn from them. I struck upon the idea of leading a discussion about “participatory research” since it would allow me to learn more about it as I prepared for the class. Continue reading

Learning about PhotoVoice

At yesterday’s A Healthy America event, I met Yanique Redwood, President & CEO of the Consumer Health Foundation. In researching more about her work, I found that she uses a qualitative research method called PhotoVoice, described as “participatory photography for social change.”

A man in Tanzania sorts his medication while his mother looks on.

View the PATH slideshow

Check out some of the projects enabled by PhotoVoice:

I realized that my own bias is toward storytelling in data and words, but that is a limitation I should not visit on the communities I hope to serve as a researcher. Once again I’m humbled by a chance encounter at a meeting and the exchange of business cards. How much we all have to learn from each other, if we can only connect!

The data-driven future of…

Read this quote from Owen Thomas’s piece about Jeff Bezos and his purchase of The Washington Post, but insert “health care” in place of “media”:

In the tech world—the world where Bezos made his fortune—it’s taken for granted that one should use data about how people use a product to make that product better and introduce new features.

What if we actually did that in the media world—without sneering, without gritting our teeth, and without oversimplifying the enormity of the task?

What if?

What if that question were extended to research methods? That is, what if researchers could, without sneering or gritting our teeth, use data to make our projects more inviting to respondents and participants?

I can’t wait to get to explore these ideas at Stanford Medicine X this year. I’m going to lead a Master Class on Participatory Research and this will be one of my themes — data-driven innovation. Another session will focus on other “What if health care…?” questions. I’d love to get the discussion going now on both sessions — please comment below if you have ideas or questions. And I hope I’ll see you in Palo Alto later this month!

Participatory research: it’s not everything, it’s the only thing

Campo Volantin footbridge by dalylab on flickrOne of my favorite structures in Bilbao is the Campo Volantin footbridge, designed by Santiago Calatrava. I went out of my way to walk over it many times while I was visiting that beautiful city. Approaching it was a visual treat and there were always musicians playing on it, an aural treat.

But once you start walking on the bridge, you can’t help but notice the ugly plastic rug that’s been laid down on top of the glass tiles (over a layer of worn-out black strips). Continue reading