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 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 Salene MW Jones, PhD | Dec 20, 2021
When I was training to become a clinical psychologist, my supervisors gave me several pieces of great advice. One told me that the psychologist or therapist is the expert on mental health treatment and research but the patient or client is the expert on their own...
by Brenda Merriweather | Dec 7, 2021
In 2004, as a staff nurse at Baptist Medical Center South in Montgomery, Alabama, I cared for a group of pediatric and adult African-American Sickle Cell patients who would come to my medical-oncology unit for treatment. They would stay a few days, get fluids, and get...
by Lisa Gualtieri, PhD, ScM | Nov 22, 2021
The answer is probably not your medicine cabinet. The answer may be your nightstand, kitchen counter, or a variety of other locations in your home. The question is, where do you store your prescription medications? I became interested in medication adherence through...
by Geri Lynn Baumblatt | Oct 11, 2021
I have attended hundreds of conferences: patient experience, patient education, health tech, health literacy, shared decision making — and the best part has always been meeting other advocates, patients, and family caregivers. Too often, unfortunately, these...
by Sean Erreger | Oct 4, 2021
Navigating youth and their families through what is often a complex mental health system is a job that is frustrating but also an honor. As a licensed social worker, my compass through the journey is guided by a group of core values. The National Association of...
by Carly Flumer | Sep 13, 2021
I didn’t want to tell anyone about my diagnosis. I thought my family and a few close friends were enough. But I got brave one day four years ago and posted about it on social media. The outpouring of support was incredible. I thought, if I’m receiving this much...
by Tim Blevins | Aug 23, 2021
Having been in healthcare for over 30 years as a clinician and working for four health plans, I am fortunate enough to have had exposure to a very broad network of healthcare professionals and have a deep understanding of healthcare systems and structures. I have...
by e-Patient Dave | Mar 8, 2021
Time for change! The theme of our 2019 conference was #Time4Change. This post kicks off a major 2021 campaign for our Society: the Participatory Medicine Manifesto. At that event we took action: in a design-thinking exercise, attendees crowdsourced the ideas that have...
by e-Patient Dave | Dec 10, 2020
As regular readers know, our Society for Participatory Medicine has always been a strong advocate for the OpenNotes movement as a key enabler of patient power. As co-founder Dr. Danny Sands often says in his speeches, “How can patients participate if they...
by e-Patient Dave | May 12, 2020
This morning the New England Journal of Medicine released the latest publication about OpenNotes. The news: an innovative pre-visit form created for the “OurNotes” study has been released before the study is completed, for other providers to use to improve...
by e-Patient Dave | Mar 9, 2020
The long-awaited rules on data access have been published this morning from two key parts of the US Department of Health & Human Services. I’ll expand this post with more links as we digest what’s been offered and will unfold in the coming week. The...
by e-Patient Dave | Feb 28, 2020
Now this is patient-centered care. This may be the most wonderful participatory innovation I’ve seen since OpenNotes in 2012. This one’s completely different: OpenNotes is about patient access to the medical record, but this one invites patients to see...
by e-Patient Dave | Nov 24, 2019
SPM member Brenda Denzler had Inflammatory Breast Cancer (IBC), which was followed by years of intractable symptoms that her doctors couldn’t diagnose – all their tests kept saying she was “fine.” “But I live with this body,” she...
by Ileana Balcu | Nov 20, 2019
Jane Sarasohn-Kahn makes a compelling argument at how important it is to think about all aspects of health, not just the healthcare system in her most recent blog post: Social Determinants of Health – My Early Childhood Education and Recent Learnings, Shared at the...
by e-Patient Dave | Nov 19, 2019
I’ve just discovered something I’ve long hoped to see: a training module to teach medical students about e-patients and how to interact with them! It’s a paper in the journal Medical Teacher: “But Dr Google said…” – Training medical students how to...
by e-Patient Dave | Nov 1, 2019
This is a cross-post from my personal blog. The organizers of the FHIR #DevDays conference next month have announced the four finalists who will come to Amsterdam to present their ideas to a panel of judges. I’ll copy/paste here from the conference’s...
by e-Patient Dave | Oct 31, 2019
In 2009, the Society for Participatory Medicine was created to continue the work of “Doc Tom” Ferguson (1943-2006), the founder of the e-patient movement and a true visionary who foresaw decades ago that “e-patients” (empowered, engaged, equipped, enabled)...
by e-Patient Dave | Oct 14, 2019
Hello, SPM members! – And honored guests, perhaps soon to be members. Join here. :-) Over the past few weeks, I have received quite a few inquiries about livestreaming opportunities for our conference in Boston, Tuesday, October 15. If you can’t attend...
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