by Eve Harris | May 1, 2013 |
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...
by Dave deBronkart | Mar 30, 2013 |
Well well well, dare I say the times are changing? Not long ago all we ever heard was “Stay off the internet.” But a friend just said his endocrinologist and his radiologist BOTH recommended ThyCa.org to him! (Twitter: @ThyCaInc) It’s “created...
by Susannah Fox | Feb 28, 2013 |
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...
by Susannah Fox | Nov 4, 2012 |
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:...
by Susannah Fox | Sep 16, 2012 |
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...
by Ileana Balcu | Jul 25, 2012 |
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...
by Susannah Fox | Jul 19, 2012 |
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...
by Ileana Balcu | Jul 17, 2012 |
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...
by Susannah Fox | Jul 10, 2012 |
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...
by Susannah Fox | Jun 26, 2012 |
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...
Lived Experience + Expertise = ValueJuly 22, 2017
#BMJDebate tweetchat: “terms of engagement” for patient voices, noon Thursday ETJuly 12, 2017
Millenson in BMJ: When “patient centred” is no longer enough: the challenge of collaborative healthJuly 7, 2017
Webinar today, 11am ET: Increasing patient involvement in assessing new treatmentsJuly 5, 2017
What My 90-Year-Old Mom Taught Me About the Future of AI In Health Care (WBUR)June 21, 2017
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