by Ileana Balcu | Jan 14, 2014
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...
by Casey Quinlan | Nov 22, 2013
Regina Holliday and her Walking Gallery project are featured in a new short film. Here it is: The Walking Gallery of Healthcare from Eidolon Films on Vimeo. How a movement begins…
by Casey Quinlan | Nov 18, 2013
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...
by Ileana Balcu | Nov 13, 2013
Below is a guest post by Suzanne Mintz, founder Family Caregiver Advocacy about a summit where patients and caregivers were an integral part of the healthcare redesign process. More and more you will see us featuring meetings and conferences that include patients and...
by Ileana Balcu | Oct 10, 2013
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...
by Ileana Balcu | Sep 11, 2013
SPM is launching a tweetchat series this Saturday, Sept. 14 at 3pm Eastern, 7pm GMT (use The World Clock [link: http://www.timeanddate.com/worldclock/converter.html] to find your time zone). The chat will be led by Casey Quinlan, @MightyCasey; Ileana Balcu,...
by Alicia Staley | Aug 25, 2013
SPM member Erin Moore (@EKeeleyMoore) is one heck of an activist parent. She sees the future, she has a stake in it – a kid with a chronic disease – and like many of us, she’s not waiting around for someone else to make it happen: she’s engaged...
by Susannah Fox | Jul 19, 2013
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...
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 e-Patient Dave | 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...
by Ileana Balcu | Jun 22, 2012
Thanks to David Harlow for the heads-up to a contest for scholarships for patients to attend Mayo Clinic’s Social Media Summit: Excerpt: The Mayo Clinic Center for Social Media is offering an opportunity for patient advocates to attend its Social Media Summit...
by Ileana Balcu | Jun 20, 2012
Do you have the ideal healthcare network of individuals supporting your physical, mental, emotional, and spiritual aspects? Sally Richards does. She works with hospitals, neurofibromatosis (NF) organizations, government entities and patients in what she calls “a...
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