“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 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

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

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!

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

Mobile, social, health, care

Two people holding hands at the mouth of a tunnel. Uploaded by Adam Foster on flickrA clinical trial in Kenya confirmed that human kindness is the secret ingredient to health and mobile phones are an ideal delivery system. Well, that’s my interpretation.

Here’s the gist:

Taking your meds is essential to maintaining your health when you live with a chronic condition. People know this, but they need help doing it. They tend to tune out reminders — constant texts become more of a nag than a boost, studies show. Instead, people respond to empathy — in this study, a single word, texted once a week: “Mambo?” which means “How are you?” People who texted back that they were not feeling well received follow-up phone calls to see if clinicians could help them get back on track. Continue reading

Who provides the fuel for the health data fire? Hint: Look in the mirror.

“If iron ore was the raw material that enriched the steel baron Andrew Carnegie in the Industrial Age, personal data is what fuels the barons of the Internet age.” – a line from Somini Sengupta’s article in the Sunday New York Times, “Letting Down Our Guard With Web Privacy.”

I think personal data is fueling health innovation, which is why I hope Sengupta’s article is widely read in the health world. Who are the barons in the new health care enterprise? Who are the serfs? What assumptions are being made and what choices do people have about their health data — and are they aware of them? Continue reading

Listening to patients at Medicine 2.0

I wrote a long post on e-patients.net about my one day at Medicine 2.0 on Saturday. Here are a few highlights — people who focused on listening to patients and caregivers:

“To learn

listen well

to impressions

voiced by patients

first”

– Sally Okun of PatientsLikeMe closed her presentation with this poem. Continue reading