by e-Patient Dave | Mar 16, 2023
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...
by Eric Bersh | Mar 14, 2023
Recently, there has been a large emphasis by organizations that are interested in addressing bias, health equity, and increasing diversity. The verdict is still out if these are real structural changes, or just surface statements that have no real impact. It is...
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 | 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 | 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 Eric Bersh | Sep 7, 2022
The journey to diagnosis for patients, particularly those living with complex health conditions remains challenging for patients, their loved ones, and their physicians. As frontline experts on the diseases and conditions affecting their lives, patients and family...
by Eric Bersh | Aug 23, 2022
Being born with cystic fibrosis, a progressive, genetic lung disease, I have had countless health encounters throughout my life. Through these experiences I have learned the power that lies in self advocating for my health in the clinic setting with my doctors and...
by Eric Bersh | Jul 12, 2022
When I heard the words, “You have Lupus,” I didn’t know the magnitude of how much my life was going to be tested. It started in 1980 when rashes and unexplained fevers plagued my life. Seeing doctors about my symptoms led to solutions that were only temporary. Fifteen...
by e-Patient Dave | Jun 17, 2022
I know this is short notice. Quickly submit a letter TODAY JUNE 17 demanding that CMS not give in to industry pressure on this vital patient empowerment issue. Pick a template letter provided by Leapfrog Group and use it as is, or change as many words as you like:...
by Eric Bersh | Apr 20, 2022
Editor’s note: When oncology and hospice nurse Theresa Brown was diagnosed with breast cancer, she couldn’t believe how disorganized and unempathic her care was. Ultimately she called it D.I.Y. care, as in Do-It-Yourself: figure out the treatment process, find the...
by Eric Bersh | Apr 13, 2022
For women of color facing breast cancer diagnoses, making decisions is a precarious balancing act, a process with significant implications across healthcare and society. Diagnosis tends to occur at a younger age (that is, before 40, when many screening programs become...
by Eric Bersh | Apr 6, 2022
Irish playwright George Shaw once remarked that “the single biggest problem in communication is the illusion that it has taken place.” This is a core concept for professional healthcare communicators like myself, but it was not until I experienced this idea in action...
by John Novack | Mar 7, 2022
Editor’s note: Moyez Jiwa, MD, founder of The Journal of Health Design, and The Health Design Podcast, believes that we can improve outcomes for patients as soon as today by simply paying attention to the small details that needlessly undermine those outcomes. In...
by Eric Bersh | Mar 1, 2022
In 2004, at age 17, I was diagnosed with an adult-onset muscle disease called limb-girdle muscular dystrophy type 2B (LGMD2B). My diagnostic journey began 10 months prior, the result of a routine blood test after a car accident which yielded concerning biomarker...
by Eric Bersh | Jan 27, 2022
After a happy couple has been dating and in a stable relationship for a while, they often decide to take a traditional, next, more permanent step to the institution of marriage. They make an announcement to kick it all off: “We’re engaged!” When we hear about an...
by Helene Clayton-Jeter, OD | Jan 14, 2022
Join the Society for Participatory Medicine (SPM) Mid-Atlantic and HealthScape LifeSciences LLC (HSLS) “Conscious Conversations” workshop on Zoom, February 1! Learn how to apply the principles of nonviolent communications (NVC) from expert and life coach Rob Kanzer...
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