e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
Participatory Medicine: the Final Mile of Health Care System Change
When I describe the concept of participatory medicine, people who work in the healthcare industry often confuse it with other change initiatives, like social determinants of health or better access to care. It’s a different story when I describe participatory...
AI Gives SPM a New Opportunity to Lead
I recently posted an article entitled, “In Cancer, Patient-Empowering AI Begins to Change Care, Relationships,” that contained this declaration, “Good medicine needs to become participatory medicine, not least because involving the patient as a partner consistently...
In hospice, Mighty Casey receives SPM’s “Doc Tom” Award
The board of our Society for Participatory Medicine has voted unanimously to give the society's "Doc Tom" award to life member Casey Quinlan, who is in hospice in Richmond VA, as we blogged this month. On Saturday former board member Jan Oldenburg presented Casey with...
Full scholarship or free reg for DIA Global Boston: apply by March 31
On Twitter this morning SPM member Stacy Hurt announced that the big pharma conference DIA Global in Boston this June is #PatientsIncluded. Several levels of support are available, including one full scholarship including travel expenses, plus ten free patient...
Mighty Casey is entering hospice
Update 3/19: We've opened a CaringBridge page for Casey, where her support team will post updates. You can subscribe to get notifications and to leave words of support, memories, etc. Anyone can view; posting requires free registration. This news hit us worse than a...
How to Increase Applications from Underrepresented Scholars for Funding Mechanisms
Recently, there has been a large emphasis by organizations that are interested in addressing bias, health equity, and increasing diversity. The verdict is still out if these are real structural changes, or just surface statements that have no real impact. It is...
When a Genetic Counselor Brought Information – and Comfort
Editor’s note: In her book, Rare Like Us: From Losing My Dad to Finding Myself in a Family Plagued By Genetic Disease, Taylor Kane shares the invaluable lessons she learned growing up in a family plagued by a genetic disease so rare that most doctors have never seen...
Why Dying is Not Giving Up
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...
Patients and Industry: Starting Our New Life Together in 2023
Flash back to my article for the Society for Participatory Medicine last year: Let’s Save the Date and Make Patient Engagement Official in 2022. I’m here to deliver some great news: we tied the knot! By the power vested in clinical research, the FDA now pronounces us...
How All of Us in Healthcare Can Close the Empathy Gap
I recently saw The Color of Care, a documentary highlighting the disparate and inequitable care received by Black and Brown individuals during the COVID-19 pandemic. During the movie, Executive Producer Oprah Winfrey opined that one of the primary issues with...
Expert Advisory Boards: A New Model for Co-Exploration
A few years ago I learned that non-profit organizations MUST have a Scientific or Medical Advisory Board in order to be listed on NIH's website as an informational resource for patients. Likewise, many foundation grants require a non-profit to have a similar board....
Health Literacy Requires Talking with People – Not Patients
“When someone is having an acute situation, that is not a teaching moment.” Peter Pitts I recently participated on a panel at the STAT Summit with two brilliant healthcare thought leaders, former FDA Associate Commissioner and current president of the Center for...