“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.

Invent Health

As winter sets in here in DC, I’m warming up with memories of September’s Stanford Medicine X conference. I loved putting together a keynote that highlighted how the maker movement intersects with the e-patient movement — and how private sector and government leaders can benefit. This intersection, and the lessons we are learning from it, are the latest examples of how the internet gives us access not only to information but also to each other. That deceptively simple insight is, I believe, the key to unlocking the potential for innovation in health care.

Here’s an excerpt:

Stanford University posted the full video on their Facebook page and you can learn more about the Invent Health initiative I launched at the U.S. Department of Health and Human Services by reading the following posts:

Health care needs a jolt of innovation. Here’s how we’re approaching it at HHS.

Invent Health: The National Week of Making

The Invent Health Initiative: Hardware Innovations for the Low-Resource Environment

Invent Health: Finding Common Ground

The Invent Health Initiative: Hardware Innovations Hard at Work

Invention and Innovation in Emergency Preparedness

Empowering Inventors to Create Tools for Better Living, Better Clinical Care

Kid Inventors Focus on Health

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?

Managing the risk of food allergy

When our son was diagnosed with food allergies, we were absorbed into a new way of life, learning the folkways of keeping him safe. We labeled every jar and can in our pantry and fridge so that anyone who visited could see at a glance what was safe (green) or unsafe (red). Like Curtis Sittenfeld, who wrote about learning to live with a child’s allergies in The New York Times, we came “to know certain products so well that when they get a new ingredient, it’s like a friend getting a haircut.” Continue reading

The Power of Connection

Portraits of past HHS secretaries above Post-its

Portraits of past HHS secretaries overlooking an IDEA Lab design session

Technology enables the mission of U.S. Department of Health & Human Services (HHS). It widens access to information and tools and pushes power out to all parts of the network, from our colleagues in the federal workforce to our fellow citizens. At HHS, we seek to create a learning system that recognizes the potential of every stakeholder in the network to contribute, from patients and caregivers to clinicians, researchers and policymakers.

The CTO of HHS serves the Secretary and the agency by bringing new approaches to the problems faced by those on the front lines of medicine, public health, and social services.

I see the role as a spotlight and a beacon, highlighting the innovative work being done inside and outside the federal government and inspiring people to reach higher, in service to citizens. Continue reading

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

Hack needed: Tiny pills, trembling hands

Top of a pill bottle reads "Close Tightly" Image by Are W on flickr

A friend writes:

I am sweeping the kitchen and just found one of my brother-in-law’s Parkinson’s pills [Ropinirole].

Every time he has to take it, he drops it. It is tiny and, well, he has Parkinson’s. I can’t tell you how many times the kids end up on the floor looking for the pill he just dropped.

Are there any hacks for a Parkinson’s patient to manage those tiny pills?

For those who aren’t familiar with the term “hack,” its original meaning is “an appropriate application of ingenuity.” I’ve written about home health hacks here and here and I’m actively seeking ways to connect health hackers/makers/inventors with the people who need them. I was thrilled when my friend texted me with this question and I’d love to help.

One idea I had: put a dab of honey on your finger and use that to pick up the pill.

Another idea: ask gardeners how they manage the sorting and handling of tiny seeds.

If you’ve got an idea, please share it in the comments below!

(Image courtesy of Are W on flickr.)

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

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