Society for Participatory Medicine
e-patients.net blog
patient networks
e-patient stories, e-pts resources, key people, patient networks, social media
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 rated Tweetchats with almost 6,000 tweets per month. In less than two years the group has gained [...]
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A sign of the times: thyroid cancer patient says TWO docs recommended a patient organization
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 and maintained by thyroid cancer survivors,” with a long list of physicians as partners [...]
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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 to encourage companies to develop rare disease therapies, and the [...]
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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: – Twitter turns serious during a crisis – Certain users and hashtags can [...]
Read Morepatient networks, pt/doc co-care, reforming hc, research issues, trends & principles
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 conversation did for me.
Read Morefound on the net, patient networks
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 you - supporting and getting support: http://www.hivestrategies.com/2012/07/the-intimate-public-extending-the-benefit-of-healthcares-online-communities/
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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 I had painted their portrait and shown it with [...]
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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 registration, use the link http://events.r20.constantcontact.com/register/event?llr=66td54gab&oeidk=a07e64g7v926c2fc283 Friday July 20, 2012 from [...]
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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 can spit into a tube the ability to gain insights into their [...]
Read Morenet-friendly docs, patient networks, pt/doc co-care
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 Jain. The result of that correspondence, [...]
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