“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.

Documents of controversial times

I’m speaking today at Stanford Medicine X about what I’ve learned exploring the intersection between the Maker movement and health care (tune in at 4:25pm Pacific).

I posted a short version of my remarks on Medium, but I thought I’d post an image I was very happy to find to illustrate one theme: revolutions happen when people are connected not only to information, but also to each other. And that happens when people gain access to the means of production and distribution, as we saw in 1776, when Thomas Paine’s pamphlet, Common Sense, helped spark the American revolt against British rule.

Common Sense, a pamphlet by Thomas Paine (1776)

Common Sense, a pamphlet by Thomas Paine (1776)

Pamphlets can be printed cheaply, quickly, and in huge numbers. They can be transported in bulk and distributed to a wide audience. My favorite description of pamphlets is that they are “documents of controversial times.”

Here’s my question: What is the equivalent today? What are the means of production and distribution that are connecting people with information and with each other? Twitter, blogs — what else?

Slow down

Slow Down Health Axiom

Juhan Sonin and his team at Involution Studios capture essential health messages in cards — actual, physical cards that you can stack in a deck or lay out across a table. The front is an arresting image and the back lists evidence and tips. The cards are tactile, delightful artifacts of an ongoing conversation that Invo is holding with the world.

I contributed to a recent newcomer to the deck: Slow Down. I was inspired by Fahd Butt‘s “slowgrams” — the sketches he produced instead of trying to capture life moments with a camera.

Poetry is my personal slow-down hack. I never leave for a trip without tucking a favorite book of poems into my bag. Grace Paley, Billy Collins, and Vera Pavlova are currently seeing a lot of the country.

Because even as I relentlessly gather, share, and create evidence for why peer-to-peer health care will transform our lives, if we let it, I know that my own health and happiness must come first.

For the full Slow Down story, please read: “How a Health Axiom Card is Made.”

Find your people

Look Beyond Face Value: Moebius Syndrome Awareness DayLongtime readers will recognize this story, but I’m posting it again here–and on Medium–to honor Moebius Syndrome Awareness Day:

When Burt Minow was born in 1922, his disability — partial hearing loss and complete facial paralysis—was immediately apparent. His mouth was frozen in a sort of frown, and he could not suck on a nipple to get milk. Doctors advised his parents to put him in an institution and forget about him. Continue reading

“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.

Break my heart, make me change

Take a deep breath and then look at this data about HIV in the U.S.:

HIV disproportionately affects blacks in the U.S., by Jeff Guo of the Washington Post

I have seen these numbers before, but never laid out so clearly and so beautifully. Thank you, Jeff Guo of the Washington Post, for breaking my heart. Thank you, because I think we all need our hearts broken anew from time to time. We need to face the reality of the epidemic. We need to look in the mirror, wipe away the tears, and see ourselves clearly in order to start making plans for change. We need to visualize health in order to communicate and pursue it.

And yet:

“We’ve known for over 50 years that providing information alone to people does not change their behavior.” – Vic Strecher, quoted in a fabulous article by Jesse Singal titled, “Awareness is Overrated.”

So what will? What can make people change their behavior?

I think advice and information delivered by a “just-in-time someone-like-me” holds promise. And we have the ability to connect in our hands.

We are all asking secret questions online — even more so when we use our phones. People who search the AIDS.gov site on their phones, for example, use much more specific terms than those who search from a desktop or laptop.* Mobile seems to make things personal, immediate, and specific.

What if all the knowledge and insights being found privately could be shared more widely? Not everyone is ready to have words like “vagina” and “anal” pop up on their Facebook page, but what if there was a way to bring frank, truthful talk about sex to people’s phones, one-to-one, one-to-many, or many-to-many? What if we could unleash the power of science, storytelling, and sharing? What if we could make health information relevant, in the moment, when we need it, like a heartbeat, a deep breath, or a caress is relevant?

Who knows better than someone like me how to break my heart, make me laugh, and get me to change?

Other sources of inspiration, which I need today after seeing that data:

What breaks your heart? What inspires you?
_____________________

* Source: Cathy Thomas of AIDS.gov, at a meeting of the Federal HIV/AIDS Council in 2012.

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!