by Richard G Kahn | Jul 29, 2021 |
Usually, I write from the perspective of a patient advocate diagnosed with Wolfram-like syndrome, a rare disorder of the endoplasmic reticulum that typically manifests first with optic atrophy, then insulin-dependent diabetes. For the purposes of this blog post,...
by Tamika Felder | Jun 16, 2021 |
Stories have the power to punch you in the gut. Of course I mean figuratively, but in many real ways, literally too. I literally feel pain–coupled with inspiration–when fellow cancer survivors share their experiences, struggles and fears. Stories have the...
by Danny van Leeuwen | Jan 12, 2021 |
Designing clinical trials for and with people with Traumatic Brain Injury. Lynne Becker looking forward over time, not backward. Building a business. Proem You know the old story of the researcher looking for their lost keys under the streetlight when they lost them...
by Danny van Leeuwen | Nov 27, 2020 |
Stories are powerful because they foster human connections, transparency, and innovation, ultimately leading to better experiences for those giving and receiving care. Healthcare workers’ perspectives are critical to creating a shared vision of health care that...
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 John Grohol | Jun 10, 2020 |
Join a live virtual Healing Story Session on June 22! “Pain, suffering, and ambivalence can co-exist with peace, joy, and self-love. Healing can take many forms. Sharing our stories helps others to find their way, and reminds us all that we are not alone.” —...
by John Novack | May 29, 2020 |
Guest post by empowered patient Howard Chang. See bio at end. I’m a highly engaged patient advocate who has faced many challenges. To my unhappy surprise, the coronavirus pandemic and lockdown has revealed once again how much I still struggle with the need to be in...
by John Grohol | May 19, 2020 |
The Society for Participatory Medicine (SPM) and the Health Story Collaborative (HSC) are partnering during this time to bring the power of storytelling to health care and explore what it means to practice participatory medicine in times of COVID-19. Please read the...
by Narinder Singh | Jul 16, 2019 |
This is Part 1 of a four part series, introduced yesterday, based on my family’s experience with our mother’s unexpected and dramatic ICU stay and bilateral lung transplant. [Download the Complete Family’s Guide as a PDF] Even the air in the waiting...
by e-Patient Dave | Jul 15, 2019 |
My name is Narinder Singh. I joined SPM in April. That’s my mom in the photo above. Last year our family was caught by surprise when she had a completely unexpected and dramatic ICU stay of three months. We had a lot to learn fast and too little help, and when...
Video Series: Doctor to Doctor – What is Participatory Medicine?August 2, 2021
Seeing Red about Pink EyeJuly 20, 2021
Boost Health IT’s Impact: Think With a Participatory LensJuly 14, 2021
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