Author Archive

Laugh, Sing, and Eat Like a Pig

July 18, 2010 · Filed Under Why PM, key people · 8 Comments

e-Patient Dave’s book, Laugh, Sing, and Eat like a Pig, is out! Mark Graban captures the health geek excitement:

The best writers make you feel like you’re spending time with a wise friend — add some tears and laughs and you have Dave’s book. I wasn’t there for his whole journey, so I’m learning new things by reading about the scary, early days of diagnosis and treatment of his Stage IV cancer. And I love the chapter-by-chapter summary of Tom Ferguson’s white paper.

Tom posted only once to this blog — his blog — before he died in 2006 and it was a tribute to The Voice of the Patient. When a group of us decided to complete the white paper and continue the blog in Tom’s honor, Dave was not yet part of the group. Now Dave is not only part of the blog, but helped start the Society for Participatory Medicine and is a central figure in patient empowerment.

Dave dedicates his book to Tom, writing: “I never met you, but you guide me every day.” I bet there are people out in the world who would say the same thing about Dave, thanks to his writing — on blogs, on Twitter, and now in this book. Dave is the embodiment of the voice of the patient. Listen and learn.

Crowdsourcing a Survey: Health Topics

July 16, 2010 · Filed Under research issues · 63 Comments

The Pew Internet & American Life Project will soon go into the field with our next health survey and we need your help.

One of our core findings (8 in 10 internet users, or about two-thirds of U.S. adults, look online for health information) is based on a series of questions that is tweaked in each survey. We re-word or separate concepts, cut some topics, and add others. Are there topics missing from the list? Which ones deserve to be repeated this year? No promises, but I asked for similar feedback in 2008 and implemented a few of the suggestions (see the “2008 only” topics below).

a. Information about a specific disease or medical problem (asked in 2002, 2004, 2006, 2008: results)

b. Information about a certain medical treatment or procedure (02, 04, 06, 08: results)

c. Information about experimental treatments or medicines (02, 04, 06, 08: results) Read more

Pandas, Lobsters, and Health Care

July 15, 2010 · Filed Under general, trends & principles · 19 Comments

Joe Kvedar asks an excellent question in his post, The Next Phase of Connected Health: Connected Personalized Health:

What are the best variables to consider when taking connected health programs from pilot to scale?

He imagines a matrix with three axes: severity of chronic illness, patient readiness, and technology readiness. That makes sense to me, as did BJ Fogg’s Behavior Model when Alexandra Carmichael described the three elements to me in words: Motivation, Ability, and Trigger.

But I felt like I could actually apply BJ’s model after seeing his simple diagram:

The element Joe is adding, which is key to health interventions, is the severity of illness (or seriousness of diagnosis). That echoes the findings of the Center for Studying Health System Change: 41% of U.S. adults are “activated patients” (the rest tend to be passive and may lack the confidence to play an active role in their health). Cancer patients are among the most activated, whereas people living with depression are among the least.

It also resonates with the Chronic Quadrangle described in The Innovator’s Prescription (p. 161 if you are a total health geek and have the book handy). Read more

Mobile, Social Health at the National Library of Medicine

July 13, 2010 · Filed Under demographics, trends & principles · 45 Comments

Update: The NLM released new widgets on July 14, along with a redesigned MedlinePlus site. (Read @eagledawg’s take on these new tools, as well as her response to this post.)

Speaking to the senior staff of the National Library of Medicine last week was like going before the best kind of murder board. Picture it: 30 of the nation’s smartest health information mavens around a polished conference room table, asking me sharp questions, suggesting new lines of inquiry, and offering their own insights. In other words, heaven.

Our jumping-off point was the Pew Internet Project’s latest research on internet penetration, mobile use, and the social life of health information. Here are my notes from Thursday’s meeting and some research questions I’m considering: Read more

Patient Communities… at Walgreens?

June 17, 2010 · Filed Under e-pts resources, patient networks · 40 Comments

In May, I spoke at the Chronic Care and Prevention Congress about my most recent report, “Chronic Disease and the Internet.”

I talked about the social life of health information and the internet’s power to connect people with information and with each other. Living with chronic disease is associated with being offline – no surprise. What’s amazing and new is our finding that if someone can get access to the internet, chronic disease is associated with a higher likelihood to not only gather health information but to share it, to socialize around it.

I built my talk around two examples of how health care can either take advantage of patients’ shared wisdom (and innovate) or ignore it (and fail). Read more

Health Geek Tip: Abstracts are ads. Read full studies when you can.

June 16, 2010 · Filed Under research issues · 28 Comments

Ivan Oransky, executive editor of Reuters Health, provided excellent evidence yesterday regarding the need to look past abstracts of journal articles if accuracy matters to you: Read more

Health 2.0 DC: Passion and Execution at Scale

June 8, 2010 · Filed Under patient networks, policy issues · 19 Comments

Stars & Bars: DC's flag

I think conferences are deeply affected by the spirit of their host city. San Francisco has its hackers and dreamers, Boston has its entrepreneurs and ivy, Paris has its pomp and worldliness. At Health 2.0 DC yesterday, my city showed that it has passion and execution — at scale.

Leave it to others to point out this city’s shortcomings. The Washington, DC, I know draws in the best & brightest, engages in debate, and gets things done.

Tim O’Reilly recently said that within the federal government he has found “an intense passion among people trying to make change.” Todd Park, CTO of HHS, expanded on that theme yesterday as he described his federal co-workers as just as smart, just as creative, and just as entrepreneurial as anyone he worked with in the business world.

We didn’t need to look much further than David Hale and his presentation of Pillbox, a partnership between the National Library of Medicine and the Food and Drug Administration. Read more

Making Health Data Sing (Even If It’s A Familiar Song)

June 2, 2010 · Filed Under trends & principles · 30 Comments

Todd Park is determined to make health data hot. He is leading the U.S. Department of Health & Human Service’s effort to make more of their data sets publicly available, from nursing home quality ratings to the food environmental atlas (view the full list of available downloads). As he says, HHS doesn’t want to choreograph the outcome of all this data liberation – they just want to make health data as useful and available as weather data.

I admit to being a little skeptical. Scratch the surface of the available data sets and you’ll find the same health disparities discussed everywhere in public health: how much money you have is a big determinant for where you live and where you live is a big determinant of your health.

However, maybe there’s something to that weather analogy. As someone said, “Everybody talks about the weather, but nobody does anything about it.” The innovators being showcased today at the Community Health Data Initiative event are examples of people who want to talk about health disparities AND do something about it.

Pew Internet research finds that at least some Americans have an appetite for government data. Do they have an appetite for doing something about it? Read more

Gov 2.0 Expo: Health Geek Guide

May 24, 2010 · Filed Under found on the net · 21 Comments

The cross-disciplinary smorgasbord that is Gov 2.0 Expo will be held this week in DC. The agenda is packed with nerdy temptations (danah boyd! Anil Dash! Tim Berners-Lee!) but here are my can’t-miss sessions. Read more