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e-Patient Lisa Adams

In this guest blog post, member Carly Medosch describes Lisa Adams whom she knows from social media. Lisa Adams was diagnosed with stage 4 breast cancer and documented her journey in social media. In another post below we describe the media firestorm that was caused...

e-Patient Manifesto: “Patients Included”

In 1517, Martin Luther nailed his “Ninety-Five Theses” to the wooden doors of Wittenberg Cathedral, sparking a global reformation of the Christian faith that’s still going on today. In the 1950s and 1960s Dr. Martin Luther King Jr. worked to drive inclusion for all in...

Join #s4pm tweetchat Saturday 10/12 at 3pm ET

We’re organizing a tweetchat this Saturday – October 12 at 3 PM ET to welcome MedX partcipants into the Society for Participatory Medicine. We will discuss our communications tools, and other topics of interset to our members: e-patients, health care...

A parent speaks: “Our child’s disease is OUR disease”

Susannah: On June 14, 2013, I attended the National Meeting on Promoting and Sustaining Collaborative Networks in Pediatrics where we discussed topics covered in a special issue of Pediatrics, among other initiatives and trends. Justin Vandergrift was one of the...

How Things Change

SPM member Jody Schoger’s post “Cancer: Part Two” at her blog Women with Cancer landed with a big thud on April 26. Schoger was recently diagnosed with metastatic breast cancer. She’s a co-founder of #bcsm (breast cancer social media), one of the highest...

Rare Disease Day 2013: Help Spread Awareness

A guest post by Wendy White, Founder & President of Siren Interactive Each year Rare Disease Day is celebrated worldwide on the last day of February. This year is even more special because it’s the 30th anniversary of the Orphan Drug Act, which provides incentives...

Sincerity in the storm (welcome to our world)

Hurricane Sandy “slapped the snark out of Twitter” for media reporter David Carr. In his column today, Carr discusses a newfound sense of community, which will sound familiar to anyone who uses social media to navigate an acute or chronic health condition:...

Medicine 2.0 Day One

My schedule only allowed me to attend Day One of the fantastically rich Medicine 2.0 Congress being held this weekend in Boston. I thought I’d share my impressions and notes in case they spark inspiration for other people, as each presenter and hallway...

About Healthcare’s Online Communities

From Hive Strategies, an interesting blog post talking about the healthcare”intimate public” – the communities that patients with a certain condition form with each other. An important part of being an e-patient is being engaged with others like...

Health Care Hackers

A few weeks ago, with a combination of alarm and excitement, I realized that I would be presenting my research about rare-disease communities to a roomful, not just a row full, of actual rare-disease patients and caregivers. This was no academic exercise. It was as if...

Social Media Breakfast – Healthcare in the Social Media Era

If you are in Boston this Friday, you can attend the Social Media Breakfast. The SPM member Alicia Staley will present the progress of the  #bcsm (breast cancer social media) community. Other speakers will be there as well and it only costs $8.00. For more details and...

CureTogether acquired by 23andme

Big news today in the health geek world: CureTogether has been acquired by 23andme. For those just tuning in, CureTogether enables people to track and share their personal wellness experiments so that others can benefit from what they learn. 23andme enables anyone who...

Bowling Alone, Healing Together

One year ago, I read a JAMA commentary that was so good I had to stand up while I was reading it: Are Patients Knights, Knaves, or Pawns? I blogged about it here (touching off a heated discussion) and started an email correspondence with one of the authors, Sachin...

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