by Eric Bersh | May 9, 2023
After 28 years of nursing I could potentially consider myself an expert in the field. But this perception couldn’t be further from the truth. I still come home from a shift and often wonder and hope that I brought comfort to at least one patient. Did I do enough?...
by Eric Bersh | Feb 14, 2023
Throughout my time as a psychotherapist specializing in end of life diseases, primarily cancer, I have spent many hours talking with both patients and medical teams about the importance of authentic communication and end of life planning. I see this kind of planning...
by John Novack | Dec 15, 2021
Pioneers of medical progress are lauded in published articles and by their professional peers. But it is often the patient advocates, particularly those who demanded better treatment, spearheaded clinical trial advances, and bravely took on institutions and standards...
by Jessica Zitter, MD MPH | Aug 10, 2021
I received an uncharacteristically anxious text from my friend Aileen: “I am having an emergency with my Mom. Please call ASAP.” When I last talked to Aileen, her mother’s dementia had been worsening slowly. A little more confusion, a stovetop left burning after...
by Danny van Leeuwen | Nov 9, 2020
Person-included research, co-production, tragedy, grief, health equity, and relationships in life and research. Chat with Amy Price of Stanford and BMJ Proem Research follows life. Life comes before research. My diagnosis of Multiple Sclerosis preceded my need for...
by e-Patient Dave | May 2, 2017
This post by SPM member MaryAnne Sterling is a thrilling sequel to our ongoing posts about CCCC (an organizational member of our Society) and its support for e-patients at their annual summit. MaryAnne is CEO of Sterling Health IT Consulting. She’s a healthcare...
by Liz Salmi | Jan 11, 2017
Intro note by e-Patient Dave: What a great development! CCCC is an organizational member of our Society, and last year we blogged CCCC conference announces inaugural class of palliative care e-patients, and now, even better news: e-patient participation is getting...
by e-Patient Dave | May 4, 2016
Guest post by SPM member Liz Salmi of CCCC, an organizational member and supporter of our Society for Participatory Medicine. Note also (at bottom) that this event provides a model for other organizations to follow: patient participation is enabled by a foundation...
by Ileana Balcu | Dec 2, 2015
Carol Gunn, an SPM physician member, was featured in a Forbes article about her sister’s misdiagnosis, and her mission after her sister’s death. Carol’s tips for patients to avoid being victims of diagnostic mistakes: Tip #1: Get a second opinion...
by Sarah Greene | Sep 6, 2015
We science-medicine-poetry junkies, along with a sizeable portion of the world’s population, are mourning the death of Oliver Sacks, the neurologist and author who died last Sunday from metastasized melanoma. And as enthusiasts of Dr. Sacks’ catechisms on the soul of...
by e-Patient Dave | Jan 25, 2014
Here’s a new “must read” for people with a grim prognosis, submitted by Twitter friend @Scanman (Vijay Sadasivam), from the Tamil region of India: How Long Have I Got Left?, by Stanford neurosurgeon Paul Kalanithi. Seven years ago that was my...
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 Susannah Fox | May 28, 2013
The Pew Research Center will release a new report about caregivers in June. As we prepare, I’m looking for stories to share with reporters so they can better understand the context for our data. If you have experience caring for a family member, a friend, or a...
by Susannah Fox | Nov 22, 2012
A guest post from the Engage with Grace team… One of our favorite things we ever heard Steve Jobs say is… ‘If you live each day as if it was your last, someday you’ll most certainly be right.’ We love it for three reasons: It reminds all of us that living...
by Susannah Fox | Jul 12, 2012
A new Pew Internet/California HealthCare Foundation report is out today: Family Caregivers Online. I thought I’d give some background on why we did the study and a few key take-aways. Caregivers are alpha geeks of health care 30% of U.S. adults are currently...
by Ileana Balcu | May 18, 2012
Neil Versel, a HIT journalist, relates a very touching story of his father’s care at two different hospitals: one was uncoordinated and prone to errors and near misses, another one was quite a good experience. Unfortunately Neil’s father had a rare poorly...
by e-Patient Dave | Dec 22, 2011
One of the highlights of 2011 for me was the introduction in May (see our post) of the Engagement Behavior Framework by SPM member (and JoPM founding co-editor) Jesse Gruman. She and her team methodically identified 43 behaviors to be done by an engaged patient or...
by e-Patient Dave | Dec 3, 2011
If you’re interested in a responsible approach to one’s own death, you’ll want to read How Doctors Die, on the Zocalo Public Square blog. It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s...
by e-Patient Dave | Nov 27, 2011
Cross-posted from my own site. Last night a dear and inspiring friend breathed her last. Monique Doyle Spencer, metastatic breast cancer patient, died at home as she wished. All knew the end was near. A couple of weeks ago she happily attended her daughter’s...
by e-Patient Dave | Nov 22, 2011
As in 2009 and 2010, this year too we donate our top post at Thanksgiving to the Engage With Grace movement, encouraging people to participate in this very important discussion, at the time of year when we’re most likely to be together with families. Because it...
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