by Ileana Balcu | May 11, 2015
This blog welcomes guest posts from SPM members on relevant topics. This is a blog post by Annette McKinnon, an e-patient in Canada. Annette is an enthusiastic advocate for patient inclusion in research and healthcare decision making. She has had rheumatoid...
by e-Patient Dave | Apr 2, 2015
SPM member/legend Regina Holliday, a powerful force for grass roots empowerment and creator of The Walking Gallery of Healthcare, got whooping cough (pertussis) this winter, despite having been vaccinated just a few years earlier. The UK magazine Pharma Times...
by Nick Dawson | Feb 9, 2015
One of our Society’s best kept secrets is the composition of our membership. And lately, some of my best collaborations are coming out of conversations with fellow members. Last week, as I frenetically packed for a trip, I was chatting on the phone with our own...
by Ileana Balcu | Oct 22, 2014
Wikipedia says “Participatory medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and … providers encourage and value them as full partners.” That movement gets a big boost in...
by e-Patient Dave | Oct 14, 2014
I could smack myself for not noticing this earlier, but it happened while I was at the ESMO conference (the “European ASCO” cancer conference) in Madrid last month: Amy Dockser Marcus has another great piece on how medicine is truly starting to engage with...
by Marge Benham-Hutchins | May 21, 2014
An international conference addressing information technology and communication in health (ITCH) will be held February 26 – March 1, 2015 in Victoria, British Columbia, Canada. Professor Stephen Hawking’s statement, “we learned to talk, we learned to listen, we...
by Ileana Balcu | Apr 14, 2014
4 minutes video in which Dr. Steven Weinberger describes why it is important to include patients in creating guidelines and decision-making processes. New ACP center will foster physician-patient collaboration : Internal Medicine News. (requires registration. I just...
by e-Patient Dave | Mar 5, 2014
Significantly expanded, below the video, an hour after the first post. Peter Frishauf, member of the editorial board of our journal, has brought what is to me the most exciting news for participatory medicine since the OpenNotes project. Importantly, this news may...
by Susan Woods | Feb 23, 2014
What do you think should be included in a course in Consumer Health Informatics (CHI) in a graduate medical informatics program? I know a graduate curriculum begging for input from the most engaged and empowered consumers, patient advocates, and technology and health...
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 | Sep 13, 2013
Guest blogger Natasha Gajewski participated in the Flip the Clinic meeting at the Robert Wood Johnson Foundation. Below are her observations about the meeting and a thought you might consider. Natasha is an e-Patient and the developer of Symple, a symptom journal for...
by e-Patient Dave | Aug 16, 2013
SPM member Kelly Young is one of the most spectacular, potent, world-changing e-patients I’ve ever seen. (See our many posts here about her activism.) Aside from all her work on RAWarrior.com and her Foundation, see how she uses this case to teach. Peer-to-peer...
by Kathleen O'Malley | Jun 6, 2013
This guest post is from SPM member Erin Moore @ekeeleymoore and is reproduced from her blog, 66 Roses, which is dedicated to finding a cure for cystic fibrosis. There was a healthcare conference last fall that I desperately wanted to go to. The conference was for...
by David Harlow | May 20, 2013
Going public recently with her story of a prophylactic double mastectomy after testing positive for BRCA1 (a gene linked to breast cancer) via an op-ed piece in the New York Times, Angelina Jolie is clearly trying to get the message out that radical choices must...
by Susannah Fox | Apr 26, 2013
What if kids were given the support to participate in and understand their own health care? – @savingcase For more health care dreams, please see: What if health care…? (Storify) Or any of my other #whatifhc posts.
by Danny van Leeuwen | Apr 11, 2013
Are clinicians from Mars and e-Patients from Venus? My experience is e-patients and clinicians can agree that they seek best health. Yet there is such a disconnect, such frustration, so much of the time. Participatory medicine strives to bridge the gaps between...
by e-Patient Dave | Feb 24, 2013
This is a long post, but it strikes deep to the core of the transformation underway in medicine, even in the science that drives medicine. It appears the world is starting to change, in a very good way. We’ve often written about the changing culture of medicine,...
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