e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
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...
“It Can Save Your Life”: How You Can Play an Active Role in Your Cancer Care – A Book Excerpt
Editor’s note: In his new book, Open Heart, Warrior Spirit: A Man’s Guide to Living With Cancer, patient activist Trevor Maxwell explains why men go into their "man caves" when facing a cancer diagnosis; provides tips for avoiding that dangerous isolation; and tells...
Patient Design: The Importance of Including Patients in Designing Health Care
This post is about a paper I co-authored in JMIR in August with Bertalan Meskó MD PhD, Patient Design: The Importance of Including Patients in Designing Health Care. It's challenging and perhaps a bit confrontational to conventional healthcare, because it directly...
A Citizen’s Response Corps for Digital Health
Editor’s note: In his new book, The Long Haul - Solving the Puzzle of the Pandemic's Long Haulers and How They Are Changing Healthcare Forever, journalist and patient Ryan Prior depicts the courage of patients with Long COVID who were the first to name, research and...
SPM and health equity: is our Manifesto equitable? Join us Oct. 20
Join us in Boston, Thursday afternoon, October 20. Oct 20 update: Here is the updated Zoom link. The Society for Participatory Medicine believes that the culture of healthcare is not benefiting everyone equally and needs to change. And healthcare won’t get better...
Storytelling: Where Compassion is Born
Editor’s note: In this excerpt from her latest book, Ducks in a Row, Canadian-based author, Sue Robins explains the power of storytelling for everybody invested in health care—patients and clinicians alike. A well-told story, Robins explains, has the ability to...
Building Us Up, Not Tearing Us Down
“Lack of effort and persistence” Those words cut like a knife, leaving a deeper wound than any facet of illness my daughter has faced. A provider used those words to describe my 19-year-old daughter Sara, who has lived her entire life with chronic complex medical...