“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.

How my food-allergy community “flips the clinic”

May 10-16, 2015, is Food Allergy Awareness Week.

I am grateful to the women (and a few men) who help me care for my son with food allergies. I’ve never met most of them in person, but they are there for me, 24×7, answering questions and sharing resources. Continue reading

Public Q&A: Online patient communities

A community colleague recently asked me where he might find the latest numbers on the percentage of U.S. adults who participate in online patient communities.

In the spirit of “public Q&A” I’d like to share my answer and ask people to add tips about other resources in the comments.

Up until July 2014, I led the Pew Research Center’s health and technology portfolio. I believe that data is still relevant, so that’s where I’ll focus.

Public opinion polling about a rapidly evolving field is a challenge, to say the least. We constantly talked at Pew Research about how to capture a behavior early, before it morphed into something else, and without naming a certain platform (see: The Twitter Question and Changes to the way we identify internet users.) Continue reading

Public Q&A: How to support an introvert in an increasingly connected world?

All signs point to a social revolution in health. As I’ve put it, the internet gives us access not only to information, but also to each other. Crucial advice can come from a just-in-time someone-like-you as well as from a clinician.

So what happens to people who are shy or introverted? If sharing and learning from others is a key to health, how might we support those who do not easily participate in social settings, on or offline?

A friend wrote to me this week and gave me permission to share his question here:

While putting a ton of energy into helping guide my dad’s care — he’s not doing terribly, but aging incredibly quickly — I’ve learned I’m unable to be there for my mom as much as I’d like. I’m probably the one person in the world she can most talk to, but I don’t have the strength to also help her with the process of letting go of the idea that we can’t fix him.

She is yet another caregiver who doesn’t have the support she needs.

She’s also very private. She has very few friends she’s really open with and would never consider being in an online community.

What to do? Continue reading

Share the glow

Conference tweets are a little like brunch pics on social media.

Stanford Medicine X: Sunday morning panel

Sometimes I want to reach out and say, “Shhh, it’s OK. I’m so happy that you’re happy with your eggs, but you don’t need to show them to me.”

Then again, sometimes you see a pic that makes your mouth water and you think, “Next time, that’s going to be me eating that yummy food.” Or you go into your kitchen and cook up something delicious right here, right now, inspired by your friend’s experience.

Maybe that’s why we can be so manic on social media. We want other people to feel what we’re feeling. We want to share the glow.

That’s what I hope to do when I share my experience at Stanford Medicine X, where the glow is so very bright. I want your mouth to water. I want you to get some of that good stuff for yourself, either by finding your way there next year or finding something similar locally.

I put together a Storify to capture the spirit of the panel I was on along with Pamela Ressler, Meredith Gould, and Colleen Young (pictured above). The experience of preparing for that panel — and sharing the conversation so openly with the world on the livestream — was transformational. I think we are really on to something. I’m not going to let the fact that the conference ended stop me from continuing to push forward on what we learned together.

Pam Colleen Susannah Meredith photo by Gilles

Post-panel photo by Gilles Frydman

If you want to see more of our brunch pics from Medicine X, check out:

I’ll add links to other sources of the Medicine X Glow if I spot them. Please post in the comments if you’ve got ideas about our panel topic: how to create, build, nurture, and spread community in health. And, related: how to share the magic of being at a conference (or brunch).

Oh, and compliments to the chef, Larry Chu, and his crazy-talented crew who cook up Medicine X for us. Delicious, year after year.

“One person’s TMI is another person’s need-to-know.”

- Meredith Gould, aptly summarizing a key discussion point for our upcoming panel, “Communicating the experience of illness in the digital age.” (TMI stands for “too much information.”)

too much information by mkorsakov on Flickr

(What I imagine the experience of illness feels like to people cut off from communities of fellow patients and caregivers. Photo credit: mkorsakov on Flickr.)

We are flipping the panel, posting ideas and sparking conversations in advance so that when we arrive at Stanford Medicine X, the on-stage event will be one more link in the chain, not the starting point.

Catch up:

What else can we do to engage more people in the discussion? Please share ideas in the comments.

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!

Health Care Hackers

Destination DIY is an independently-produced public radio show and podcast featuring creative solutions to big problems. Sarah Yahm did a beautiful job producing the latest show and I was honored to be part of it:

A few footnotes:

For further reading on this topic, please see:

The internet spins both ways

Did you know some doctors once had a hand signal to warn their colleagues about internet-using patients?

I talk about this and other health care history, plus a bit about the possible future (including some market opportunities), in an interview with Alex Howard:

One study I cite in this segment of our conversation centers on the analysis of messages posted to an online breast cancer community. Researchers found that 10 of 4,600 postings were false. But forum participants corrected seven of the misleading posts, often within a few hours. Only 3 posts containing misinformation went unchecked by the community.

Sure, that’s 3 too many, but the analysis also shows that this was a high-level medical discussion among women whose lives were at stake. Group members talk about prescription-drug shelf life, disease-staging parameters, and the likelihood of recurrence within five years – serious topics, taken seriously. The excerpts show that patients, when given access to sound medical information, cite it and put it to use.

I use this example to make the point that the internet can help spin conversations toward misinformation or toward enlightenment. The question is: which will we choose? Which will we nurture?

See two more videos and read Alex’s article about the recent Health Datapalooza: Peer-to-peer healthcare, e-patients, and self-tracking drive health’s social revolution.

As always, I’d welcome your own memories of our recent past and predictions for the future.

Evolution of online patient communities

A conversation broke out on Twitter this morning about the evolution of online patient communities — how some people prefer to stick with older, familiar, “it just works” technologies rather than try to migrate to a new platform.

Catch up by reading this Storify.

I’d love to work on this with the health geek tribe if people want to continue the conversation in the comments on this post, where they’ll last longer and we have more space.