What I’m reading, listening to, admiring…

Susannah at the library

I hunkered down at the library this week, working on a couple of long-term projects.

I kept one eye on Twitter, though, as I always do, and wanted to share what distracted — and inspired — me this week:

Radiolab: Worth — what would you pay for another month of life? How about a year? They get into the debate about Solvadi, which I find fascinating, and wind up talking to patients, “the people who aren’t at medical conferences.” Thanks to Mike Evans, MD, for tweeting the link.

Pew Internet: Social Media Site Usage 2014 — 81% of U.S. adults use the internet and, of those, 71% use Facebook, which is really pretty astounding (and is an opportunity for health intervention and support). Continue reading

Public Q&A: Alternatives to Facebook and YouTube?

Kathleen Bogart, PhD, studies how people communicate across disability. I met her through the work I’ve done with the Moebius Syndrome Foundation (and I wrote about her research in 2012: Facial Paralysis, Not Personality Paralysis).

She emailed me with a very intriguing question, so I’m sharing it here for discussion:

Moebius Syndrome is a highly visible, but “unrecognizable” condition. That is, strangers immediately notice that our faces and speech are different, but they don’t know the reason for the difference. They don’t understand the cause, nature, or accommodations needed for it. This makes Moebius more challenging socially than disabilities that are visible but better recognized (i.e. using a wheelchair). 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

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.

Examples, please: peer-to-peer healthcare

I’m writing an article and would love to tap into this community’s knowledge.

I know of a few examples of clinical practices using Facebook and Twitter to connect with patients, such as MacArthur OB/GYN, but I’d love to learn about other examples, especially ones which use social networking tools to connect patients and caregivers with each other.

Also, I know of patient-led groups which are powerful resources for their members, such as ACOR.org and the many groups affiliated with the National Organization for Rare Disorders, but again, I’d love to learn about some new examples, especially ones which are organized around common conditions like asthma or high blood pressure and (bonus points) have bridged the gap to include connections with clinicians.

Finally, when I think of behavior change writ large (ie, population-level) I think of organizations like Weight Watchers and Alchoholics Anonymous. Are there any other health groups that come close to those two in terms of scale and notoriety? MedHelp claims 12 million monthly visitors, for example. Does anyone else have those numbers?

Comments, please!

Pandas, Lobsters, and Health Care

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:

BJ Fogg's Behavior ModelThe 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). Continue reading

E-patients.net = suggested reading–Susannah Fox

Gretchen Berland is one of my heroes, so I was thrilled when she asked me to give a guest lecture at Yale. Then I read the syllabus for “Media & Medicine in Modern America.” It’s too cool to keep to myself… Continue reading

Twitter, Facebook, and e-patients–Susannah Fox

Here is a key line from the Pew Internet Project’s report on Twitter and status updating:

Twitter users engage with news and own technology at the same rates as other internet users, but the ways in which they use the technology—to communicate, gather and share information—reveals their affinity for mobile, untethered and social opportunities for interaction.

I’ll have data on this phenomenon in my upcoming report on health and social media (hint: e-patients are more likely than others to Twitter and otherwise update their status online).

If I’ve already lost you:

Read David Pogue’s Twitter column or, just to stick with the Times, read up on Facebook.

You don’t have to have an account to search Twitter for your favorite key words (power users can try searching for “hash tags” like #cancer, #rare, or for a lighter topic #haiku).

Visit some familiar people on Twitter: me, e-Patient Dave, Alan Greene, Cheryl Greene (to name a few e-patient folks).

Check out a few other health Tweeple (I refuse to use the term Twits): Carol Torgan, Ted Eytan, Jen McCabe Gorman, Craig Stoltz, and Jane Sarasohn-Kahn

Peek in on some mass audience feeds: Tim O’Reilly (tech guru), Evan Williams (CEO of Twitter), or badbanana (the crouton in my Twitter salad).

I would love to hear more stories about how health and health care has intersected with Twitter, Facebook, or other “communication protocols” as Gilles Frydman has termed it.