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e-Patients Blog

The blog of the Society for Participatory Medicine. Want to be a contributor?

Mighty Casey is entering hospice

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...

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When a Genetic Counselor Brought Information – and Comfort

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...

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Why Dying is Not Giving Up

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...

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Patients and Industry: Starting Our New Life Together in 2023

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...

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How All of Us in Healthcare Can Close the Empathy Gap

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...

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Expert Advisory Boards: A New Model for Co-Exploration

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....

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Health Literacy Requires Talking with People – Not Patients

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...

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A Citizen’s Response Corps for Digital Health

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...

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The Society for Participatory Medicine’s ePatients blog highlights items of interest to those in the world of e-patients and participatory medicine. Some of our most popular topics include e-patient stories, e-patient resources, problems in healthcare, medical records, news & gossip, patient networks, policy issues, positive patterns, patient/doctor co-care, patients as teachers, reforming healthcare, trends & principles, and why participatory medicine. Our newest blog posts are below. You can also subscribe to our blog via email.

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