by Linda Stotsky | Sep 27, 2017
I’m known in social media for my role as @EMRAnswers. Most people don’t know the personal and family pain that makes me know how important this is. Here it is. (That’s me above, sharing my story at the Walking Gallery meetup at HIMSS in 2015 –...
by e-Patient Dave | May 18, 2016
We lost a great one today. Jody Schoger @JodyMS was one of the founders of #BCSM (breast cancer social media), the first patient community that started on Twitter and grew into a 501(c)(3) organization, bcsm.org. She passed on this morning, and Twitter is in tears....
by e-Patient Dave | Jan 18, 2016
Longtime readers of this blog know that for years Susannah Fox was its heart and soul. She was a devoted friend of “Doc Tom” Ferguson, creator of the e-patient concept in the 1990s, and for years at Pew Research she was the dependable guru of Pew’s...
by e-Patient Dave | Dec 14, 2015
Funny how a complex cultural discussion can get triggered by something as simple as a coffee mug. In our work to change healthcare’s beliefs about the patient-clinician relationship, nothing has had greater impact in less time than our post two weeks ago The...
by e-Patient Dave | Dec 9, 2015
Guest post by SPM member Katherine Kelly Leon @KatherineKLeon of the famous “SCAD sisters,” spotlighted in this 2011 post. This is about the “Your Googling” mug many of us discussed last week. Coffee mugs are like totems, spiritual items that...
by e-Patient Dave | Jul 10, 2015
A new article in the BMJ this week reports on a good, clever evaluation of 29 online symptom checkers, showing that some have a clue and some don’t. I love it; in my view the bottom line is “Some are better than nothing, none is near perfect, and some are...
by Ileana Balcu | Jun 15, 2015
That’s the title of a new post on the Mighty blog written by Catherine Richardson, a 23-year-old chronic illness patient from Vancouver, Canada, who also blogs at findingmymiracle.com. It’s about something simple, but helpful, that her doctor told her,...
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 John M. Grohol, Psy.D. | Apr 15, 2015
According to a new study in JAMA, data breaches into people’s protected health information (PHI) records are increasing: “[The] study that found almost 30 million health records nationwide were involved in criminal theft, malicious hacking or other data...
by e-Patient Dave | Apr 10, 2015
Perhaps it’s time for an argument about how we’re doing this. Many of us in the Society for Participatory Medicine have long noted that what we’re up to here is nothing less than full-bore culture change. In my own speeches I often note that culture...
by Casey Quinlan | Dec 12, 2014
This post by long-time SPM member Michael Millenson first appeared on the EngagingPatients.org blog. We’re re-posting it here to both put it on the membership’s radar, and to invite comments on Michael’s POV that “As much as we can argue that...
by Casey Quinlan | Oct 30, 2014
SPM member Casey Quinlan (who’s posting this) was invited to attend an event at the WHO in Geneva. This post originally appeared on her Mighty Casey Media blog, and is reposted here in its entirety by SPM request. Guess who got invited to WHO? No, really....
by Susannah Fox | Sep 11, 2014
This essay was written by Sarah Greene, co-founder of the Journal of Participatory Medicine and currently Founder/CEO of RapidScience.org. “That the powerful play goes on, and you may contribute a verse.” – Walt Whitman, ‘O Me, O Life’ We New Yorkers have been...
by e-Patient Dave | Mar 13, 2014
This is a real treat – a guest post by SPM member and participatory pioneer Kate Lorig. Kate was a friend of our founder “Doc Tom” Ferguson, is cited twice in his e-patient white paper (see right sidebar), was the author of an important essay What...
by Nick Dawson | Dec 19, 2013
The Society for Participatory Medicine, through its founders and mission, has a strong belief in the expertise of its patient members – many of whom identify as providers or journalists or have expertise in HIT, health economics and other areas. Patients, often...
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 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 Nancy Finn | May 14, 2013
From the lens of a patient who recently experienced major surgery, I now realize how difficult it is to be participatory when you are in pain and taking large doses of pain medication which dulls the senses and puts you in a place where you are not really thinking...
by Kathleen O'Malley | Apr 5, 2013
This guest post by Michael L. Millenson originally appeared on The Health Care Blog. Michael is president of Health Quality Advisors LLC in Highland Park, IL; the Mervin Shalowitz, MD Visiting Scholar at the Kellogg School of Management; and a board member of the...
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