e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
Manage your health data, or trust blindly? Setting the stage for a data disaster, part 2
What if you hired a financial manager to handle your money - a trusted professional, like that guy above - then discovered they didn't know what they were doing, and your records were a mess? How would you feel? That's pretty much what happened to me ten years ago...
It’s the 10th anniversary of trying to get our health data: “I’m putting my data in Google and HealthVault”
It's a big anniversary, this spring - this week, even. Ten years ago the whole issue of personal health data exploded into the headlines. It was about something I wrote here, not having a clue it was any kind of a big thing, but it ended up on the front page of...
A million views in 44 days! ClearHealthCosts price transparency TED Talk goes viral
SPM member Jeanne Pinder has spent years crusading for price transparency with her startup ClearHealthCosts. She's formed partnerships with WHYY in Philadelphia, been on CBS News, won awards for investigative journalism with NOLA.com and Fox 8's "Cracking the Code"...
The process of shared decision-making: What it is, when it’s not, and what it should be
This is a guest post by SPM member, heart patient and author Elizabeth Rankin, BScN. Some background: one of the most-discussed topics on our blog is shared decision-making (SDM), with pages and pages of posts (75 in the category), dating back to 2010's Salzburg...
Got Candles? Happy 30th Birthday to the World Wide Web!
“Vague but exciting…,” was the response Sir Tim Berners-Lee received when he submitted a proposal for an information management system (aka the world wide web) to his supervisor in March of 1989. Three decades later, we have hit a key milestone, and approximately half...
SPM member Jeanne Pinder on TED home page
The famous TED Talks site TED.com is the holy grail of many evangelists. Aside from the extraordinary visibility it gives your message, and aside from the validation of your message (the site's tagline is "Ideas worth spreading"), it means you've gotten good at it....
Sara Riggare is Swede of the Year in medicine
Sara RIggare, one of the earliest members of our Society, has just received a great honor: Fokus magazine ("Sweden's Time") has named her "Swede of the Year" in medicine. In the photo from the award ceremony she seems appropriately thrilled.:-) A Parkinson's patient,...
So, about this “big data” thing …
On Facebook last Friday our member Carla Berg Nelson posted briefly about a new Psychology Today blog post, Data: the New Window into Humanity, by John Nosta. She tagged a number of other members (and non). I know and respect Nosta from his days creating a LinkedIn...
Gail Phillips: My journey to the Society for Participatory Medicine
Editor's note: this guest post by SPM member Gail Phillips shares the odyssey that led her through numerous related disciplines, eventually discovering our society and our conference last October. Members can submit guest posts to our blog (guidelines). Join SPM here....
Meetin’ Up and Building SPM Community in Chicago
In Chicago, SPM members have been getting together for regular meetups. It’s been fun and exciting, and lots of us think it would be great to offer the idea to other areas. Here's how we started and how we do it - take it on and make it your own! This time last year...
SPM’s team leadership search for 2019
Our Society for Participatory Medicine is growing in membership and in projects and teams. If you're a member, have you considered leading a team? If you're not, have you considered joining? The message below was posted last weekend by co-founder and chairman Dr....
Pay people for their data – yes, or no?
SPM members Casey Quinlan (yes, yours truly) and Jan Oldenburg were part of a trinity of folks debating the idea of paying people for the data they contribute to the digital economy, in healthcare and in all other sectors. Here's the full version of the conversation...