“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.

The Value of Data

Health care is in danger of missing the point.

Patient Records by ken fager on flickr

(A repost from 2014 that’s relevant today thanks to announcements at HIMSS.)

In 1999, when I was the editor of USNews.com, the dot-com boom was in full swing. Money seemed to be gushing out of the Bay Area and some sharpies at U.S.News saw an opportunity to cash in. They proposed slicing out the most marketable piece of the website — the education franchise — and selling it off for a minority stake in a college applications start-up. Continue reading

Imagining better outcomes for T1D with #MakeHealth

This post originally appeared on Diabetes Mine.

Forty-five makers, thinkers, designers and doers gathered in Cincinnati for a two-day meeting to kick off “Phase Zero” of a new initiative to imagine a new system of care for people living with Type 1 diabetes (T1D). The best way I can describe the group is that everyone was “game,” meaning up for anything, silly or serious.

I will leave the official accounts of the event to the hosts, the C3N Project and T1D Exchange. But I can share a few vignettes. Continue reading

What if we stopped panicking and started solving the problem?

Quote

“What if, in the midst of a crisis in which workflows, policies, procedures, and operations must be altered, the Centers for Disease Control and Prevention (CDC) could distribute an app to emergency departments as easily as a software developer submits an app to the Apple App Store?”

– Kenneth D. Mandl, MD, MPH, talking so much sense about the Ebola crisis that it gives me hope for the future.

Get yourself some: “Ebola in the United States: EHRs as a Public Health Tool at the Point of Care” (JAMA, Oct. 20, 2014)

Let’s fix the culture of stress

The Unmentionables panel at Health 2.0 addressed issues we don’t talk about in public but which deeply affect our health and well-being. I posted the first set of videos last week — here is the second batch.

Michael Painter, of the Robert Wood Johnson Foundation, talked about his personal perspective on stress and building a culture of health:

“You cannot get stronger without stress…but the more you stress your body, the more you have to pay attention to rest and recovery. Or you will burn out, get injured, or get sick. It’s time to fix the culture of stress.” – Mike Painter

Mike also wrote about the connection between stress and health on the RWJF blog. Continue reading

Medicine fails, patient is frustrated: Google

Jessica Hagy is one of my favorite social commentators, so I was thrilled to meet her in person at the 2010 Mayo Transform conference, curated by David Rosenman. Here is one of her cartoons from that event:

Medicine fails, patient is frustrated: Google - by Jessica Hagy

I have shared the image on Twitter a few times, including today, when I wrote that I’d add “community” to “Google” as an option for patients. Jordan Safirstein, MD, (aka @CardiacConsult) replied, “I would write ‘2nd Opinion’ – with more available telecom – pts will be able to get informed 2nd opinions easier.”

What do you think? I know it’s just a cartoon, but it captures something, and I’d love to discuss it if it inspires (or incites) you. Is technology, particularly social media, causing medical complaints to go up (as one article suggests)? Or is it a means of expression for broader cultural change?

McKinsey’s “Healthcare digital future” checks out

Stefan Biesdorf and Florian Niedermann of McKinsey wrote an excellent essay laying out 5 myths about health care and technology. It rings true so I decided to add my own evidence to their points:

McKinsey Myth 1: People don’t want to use digital services for healthcare

Pew Research has found that looking for health information is consistently among the most popular online activities in the U.S., a trend dating back to 2000, so there’s no question that this is a potentially huge market. Biesdorf and Niedermann make the point that there is a gap between consumer interest and uptake of digital health services because current offerings are poor quality or don’t serve people’s needs. Continue reading

Independence Day

Man pushes stroller up tracks covering stairs in StockholmEvery time I travel abroad, I fall a little bit in love with the country I visit. My trip to Sweden was no exception. I love how bikers have an equal right to use the streets. I love how there are stroller tracks on public stairs to make it easier for parents to navigate. I love how strong Swedish coffee is — even on airplanes. I love how everyone greets each other with a friendly “Hej!” (“Hey!”)

The other effect that foreign travel has on me, though, is an even deeper love for my own country. This time my appreciation for the U.S. was met and even surpassed by the people I met abroad. Continue reading

Recognizing the value of data

In 1999, when I was the editor of USNews.com, the dot-com boom was in full swing. Money seemed to be gushing out of the Bay Area and some sharpies at USNews saw an opportunity to cash in. They proposed slicing out the most marketable piece of the website — the education franchise — and selling it off for a minority stake in a college applications start-up.

I was aghast. There were good editorial reasons to not sell out to this particular company. But what shocked me was that the publisher did not recognize the value of the school rankings data, laboriously collected and coded each year. That was the gold mine we were just beginning to explore. Continue reading