In the spirit of public Q&A, I’m sharing an intriguing question I received recently from a community colleague. Check out my answer and then add your ideas and suggestions in the comments below. Do you know of any particularly good or interesting services to empower patients in their relationships with doctors, especially ones which involve […]
Peer support for when the system fails
What do you do when you know something is wrong but you can’t find anyone to confirm your suspicions? Or when you finally identify the culprit but find out that other people are being kept in the dark? These days it’s likely that you go online and if you are lucky — or determined — […]
What I’m reading, listening to, admiring…
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? […]
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 […]
Save us, Facebook
The 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. […]
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 […]
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