“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.

Parkinson’s For One Day

My new job is wonderfully immersive. I leave home early, come back late, and, in between, spend hours talking with people about the future of health, health care, and technology (broadly defined). The HHS IDEA Lab blog will be my outlet for sharing ideas related to the work I do there. This site will serve, as it always has, as a sandbox and outboard memory — the beginnings and middles of ideas, not always the polished ends.

For example:

One week ago I participated in an empathy exercise organized by Smart Patients: Parkinson’s For One Day.

My partner was Gretchen Church, co-founder of Movers & Shakers, a national Parkinson Disease support and advocacy organization. She and I talked for about an hour on Friday night and she started sharing pictures on Twitter, like this shot of her medications:

Pill bottles

I wore a 10-lb. weight around my right ankle and, at Gretchen’s suggestion, a high heel shoe on my right foot and a sneaker on my left. In this way I had to be aware of my gait and balance. Plus she assigned my two sons a job: to say “Freeze” randomly throughout the day. I would have to stop in my tracks for at least 30 seconds. This would mimic the challenge that people with Parkinson’s have, particularly when crossing the street. Continue reading

What I’ve been working on

It’s been a busy few weeks and I’d love to share a few items in one post:

  • I served as the emcee at the Robert Wood Johnson Foundation‘s Data for Health report release event. I attempted to capture the spirit of the event in this Storify.
  • Here’s a post I wrote about the Data for Health initiative: Imagining the Future of Health Data. It includes my favorite quote from the listening sessions: “The complexities of people’s lives don’t always fit well in a drop down box.”
  • Erin Moore and I published our second essay in the Cystic Fibrosis for One Day series. To catch you up, here’s the first installment and a Storify about this empathy exercise organized by Smart Patients.
  • Chris Snider interviewed me for his Just Talking podcast and, as usual, got me to tell a few secrets and reveal more than I meant to (if that doesn’t make you click I don’t know what will).
  • One topic that Chris and I discussed: the opportunity to reach a broader audience by publishing on Medium. I even enjoy the pushback, such as the cheeky “who cares?” response I got to one of my essays. It inspired me to write “Welcome.”

And that’s where I’ll close this quick update. Please let me know if any of the above inspires questions — the conversation is never over in the comments!

Cystic Fibrosis For One Day

Boy wearing nebulizer mask and his momI shadowed a mom and her 5-year-old with CF from afar for 24 hours.

It taught me more than I could have imagined about living with a life-shortening disease — and about myself.

This “empathy exercise” was organized by Smart Patients, an online community where patients and caregivers learn from each other. Continue reading

What health care can learn from Mike Mulligan and his steam shovel

Google is upgrading health search…again.

In 2010, I was inspired by Animal Farm to write that Google saw some health sites as more equal than others. This time I turned to Mike Mulligan and his Steam Shovel, by Virginia Lee Burton.

Cover of children's book: Mike Mulligan and his Steam Shovel, by Virginia Lee Burton

Continue reading

Save us, Facebook

Facebook logoThe Reuters story about Facebook taking its “first steps into healthcare” read like an announcement that Las Vegas was getting into entertainment or that New York City was getting into fashion. Extraordinary health communities have grown up between the cracks of Facebook’s platform. It’s just that up until now executives publicly looked the other way.

Facebook should support those communities, listen to their users, and create a safe space for health on their site.

Two examples of Facebook’s direct effect on people’s well-being:

Erin and DrewErin Moore is the mother of four children, one of whom is living with cystic fibrosis (CF). She is a member of a Facebook group called CF Mamas, a thousand parents who talk online about everything from recipes to research updates. Continue reading

Persistence vs. flow

The Pew Research Center has released its latest report celebrating the 25th anniversary of the Web. This one looks forward to 2025, with experts’ predictions. Here’s my favorite quote so far, from the “Pithy Additions” section:

Jerry Michalski, founder of REX, the Relationship Economy eXpedition, observed, “The Internet gives us Persistence — the ability to leave things for one another in cyberspace, freely. This is a big deal we haven’t yet comprehended. Right now, we are obsessed with flow, with the immediate, with the evanescent. Persistence lets us collaborate for the long term, which is what we’ll slowly learn to do … We will begin to design institutions from a basis of trust of the average person, instead of mistrust, the way we’ve been designing for a few centuries. This will let us build very different institutions for learning, culture, creativity, and more.”

I think this has implications for health communications, such as when we post information online that we hope will persist and be used as the basis for future decisions. The “flip the clinic” movement is part of this — the acknowledgement that a doctor’s appointment is just one opportunity to reach someone with health advice. Continue reading

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.

Peer-to-peer health care is a slow idea that will change the world

Someone recently asked me to name the most exciting innovation in health care today. I think he was hoping for a sexy technology tip, like an app that’s catching fire in the expert patient communities I follow.

Nope.

I’ve said it before and I’ll say it again: the most exciting innovation of the connected health era is…people talking with each other. Continue reading