Articles on patient networks


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...

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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