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,...
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Urgent – comment TODAY: stop this CMS rule change that suppresses hospital safety dataJune 17, 2022
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Creating Your Own Self-Advocacy StyleMay 5, 2022
Tell Me Your Story: How Narrative Medicine Fosters TrustApril 27, 2022
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