by Eric Bersh | Mar 28, 2024
I have a confession to make: I’m not always an effective advocate for my own care. It’s probably helpful for me to put this into context. I have been working in and around healthcare organizations for more than 25 years. I’m a researcher by trade, and worked 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 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 Eric Bersh | May 5, 2022
We cannot always choose what happens to us in life, but we can choose how we respond and handle it. Take for example, the time that I had a physical examination with my relatively new primary care physician. They did blood work and I received a report, along with a...
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 M. Grohol, Psy.D. | 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 M. Grohol, Psy.D. | 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...
by e-Patient Dave | Oct 5, 2018
Here’s the latest in our series of posts by and about the outstanding speakers we’ve lined up for the Society for Participatory Medicine’s second annual conference on Oct. 17 in Boston, attached to the prestigious Connected Health conference. Register here....
by e-Patient Dave | Jun 5, 2018
Great update 20 months later: UCSF Hospital announced Jan 10, 2020 that they’ve made radiology images available through their MyChart portal, and Dr. Mark Kohli tweeted that it’s due to the speech that resulted from this blog post! Here’s their...
by Carla Berg | Feb 14, 2018
Editor’s Note: This is a first installment (we hope) in a series about an all-too-real-life medical drama experienced by a former SPM board member and longtime sci-tech journalist Carla Berg-Nelson (aka “Carla B.”). There is much to learn here about being an...
by Nancy Finn | Oct 24, 2017
Appropriate patient care revolves around a team of individuals that includes the patient, a variety of clinicians and other providers, caretakers and patient advocates. The members of this team must collaborate to ensure that the best possible decisions are made on...
by Linda Stotsky | Sep 27, 2017
I’m known in social media for my role as @EMRAnswers. Most people don’t know the personal and family pain that makes me know how important this is. Here it is. (That’s me above, sharing my story at the Walking Gallery meetup at HIMSS in 2015 –...
by Danny van Leeuwen | Aug 28, 2017
Two stories for you: More than 20 years ago my oldest son was training to do development aid work in the bush of Zimbabwe. As part of his team training, he invited me to come give a talk about health with his team. I was a nurse and a paramedic at the time. I did the...
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