by Eric Bersh | Apr 20, 2023
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...
by Eric Bersh | Apr 6, 2023
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...
by Eric Bersh | Mar 6, 2023
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...
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 Eric Bersh | Feb 1, 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...
by Eric Bersh | Jan 11, 2023
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...
by Eric Bersh | Jan 4, 2023
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...
by Eric Bersh | Dec 14, 2022
“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...
by John Novack | Dec 6, 2022
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;...
by e-Patient Dave | Nov 30, 2022
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...
by Eric Bersh | Nov 15, 2022
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,...
by John Novack | Oct 6, 2022
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...
by Eric Bersh | Sep 27, 2022
“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...
by John Novack | Sep 12, 2022
Embracing shared decision making in medicine will improve patient outcomes, reduce costs, increase health equity, and even help alleviate clinician burnout, Danny Sands, MD, co-founder of the Society for Participatory Medicine, said in a recent podcast interview. Erin...
by Eric Bersh | Aug 17, 2022
Collaborations across healthcare can save lives – especially when working with patient advocates. For a person like me, who is impacted by a rare, neurological, and incurable disease, it’s my mission to ensure that patients’ perspectives are represented early...
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