by Eric Bersh | Aug 17, 2023
I was born with a congenital heart defect called bicuspid aortic stenosis with regurgitation. When I was 12 years old I was told I needed immediate open-heart surgery. As the anxiety, depression and sheer terror set in, my family tried to distract me by taking me on...
by Eric Bersh | Apr 20, 2022
Editor’s note: When oncology and hospice nurse Theresa Brown was diagnosed with breast cancer, she couldn’t believe how disorganized and unempathic her care was. Ultimately she called it D.I.Y. care, as in Do-It-Yourself: figure out the treatment process, find the...
by Eric Bersh | Mar 1, 2022
In 2004, at age 17, I was diagnosed with an adult-onset muscle disease called limb-girdle muscular dystrophy type 2B (LGMD2B). My diagnostic journey began 10 months prior, the result of a routine blood test after a car accident which yielded concerning biomarker...
by John Novack | Feb 3, 2022
Editor’s note: Annie Brewster, MD, founder of Health Story Collaborative, and a friend to the Society for Participatory Medicine, has just published “The Healing Power of Storytelling: Using Personal Narrative to Navigate Illness, Trauma, and Loss.” In this excerpt...
by e-Patient Dave | Sep 14, 2018
I joined the board of the Society for Participatory Medicine (sorry, I have to shorten it to SPM) about one year ago. I joined because I honestly think health care is f$#%#’ed up and I want to make a difference. We all agree about the problems, but my views on...
by Danny van Leeuwen | May 6, 2018
As you may know from previous posts, I sit as a patient/caregiver stakeholder on a Center for Medicare and Medicaid Services (CMS) technical expert panel (TEP) about Quality Measurement Development: Supporting Efficiency and Innovation in the Process of Developing CMS...
by e-Patient Dave | Nov 27, 2017
Why the Movement Needs a Breakthrough, and How You Can Help Guest post by SPM member Tyson Ortiz (right), a highly committed member of SPM who works in organizational culture change. His previous post, How I became an e-patient: through practice, with coaching (using...
by e-Patient Dave | Jun 9, 2017
Sunnie Southern is an avid activist for better care, a proactive patient (very responsible), a long-time member of our Society for Participatory Medicine, and a good friend with an irrepressibly bright disposition. As I often say, “I’ve never seen anyone...
by Danny van Leeuwen | Jun 24, 2016
SPM member Danny van Leeuwen is @HealthHats on Twitter. Last week I attended the American Academy of Communication in Healthcare (AACH) Conference in New Haven – 2016 ENRICH Healthcare Communication Course and Research Forum at Yale, entitled, Diverse Voices, Common...
by e-Patient Dave | Dec 10, 2015
One pillar of participatory medicine, as SPM co-chair Dr. Danny Sands often says, is access to our medical records: “How can patients participate if they can’t see what I see??” But a major impediment to free-flowing information is incompetence or...
by e-Patient Dave | Oct 22, 2015
Here’s something I’ve never done: I’m capturing a comment from this blog five years ago and making it a post of its own, so it’s easier to find, because I think this is going to be more and more of an issue. It’s clearer and clearer that,...
by Ileana Balcu | Jun 3, 2015
Ordinarily we limit guest posts to current members of SPM, but this is an extraordinary case. Duncan Cross’s post illustrates so many aspects of how empowered, engaged, activated patients view their lives, and how important it is to have an effective...
by Danny Sands, MD | Jun 1, 2015
Ever since the formation of the Society for Participatory Medicine we have discussed curating and sharing resources about participatory medicine. The resources might be videos, websites, blog posts, tutorials, and other online resources that could benefit patients,...
by e-Patient Dave | Apr 16, 2015
Several edits made, 1-2pm There is a movement underway – a movement for patient liberation and autonomy – and the empire is striking back, interfering with our efforts. We – the whole movement, not just SPM – need your help. If you’re in...
by e-Patient Dave | Nov 7, 2014
Susannah Fox, long one of our most popular and prolific bloggers, is roaming to wider audiences these days. She’s entrepreneur-in-residence at Robert Wood Johnson, she has her own site, and she’s just started writing on the hip-hip site Medium.com....
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 e-Patient Dave | Jul 13, 2013
In medicine, to achieve the best you need the best information. So an essential question is, who gets to say what’s best? That question took a sharp turn this week with the news that Medpedia is dead. Medical librarian Laika Spoetnik has a strong post on the...
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,...
by Ileana Balcu | Jan 24, 2013
The latest buzzword in the Healthcare IT (HIT) world is “patient-centric”. It seems that everyone’s device/software/solution is designed to be patient-centric. On the Society for Participatory Medicine’s internal listserv we discussed what does it take for an HIT...
by e-Patient Dave | Oct 30, 2012
All: I’d like to collect a list of all blog posts about this PCORI weekend, from SPM members (our Society) and anyone else. Please write to blog@participatorymedicine.org, and disregard the auto-reply that you’ll get. __________________ This post started...
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