by Eric Bersh | May 29, 2025
Editor’s Note: This is the second part of Josh Rubin’s post. The first was published on May 23, 2025 Building Upon a Powerful Foundation of Patient Empowerment In part 1 of this post I paraphrased Dr. Casey Means (referencing Robert F. Kennedy, Jr.), noting that...
by John M. Grohol, Psy.D. | Jan 15, 2025
For decades, policymakers, CEOs, politicians, doctors, nurses, healthcare workers, caregivers, and anyone who’s been a patient inside or outside a hospital has known one simple fact — the US healthcare system is broken. Every other first world country has...
by Mary Hennings | Dec 30, 2024
The news cycle is moving on, but the killing of Brian Thompson was awful, no matter how one feels about the shortcomings of the American health care system. In a recent New York Times opinion piece, Andrew Witty, president of the UnitedHealth Group, wrote that no one...
by Eric Bersh | Apr 6, 2024
To implement successful change you must, unequivocally, understand the culture of the environment you are looking to change. Culture and change management are inextricably connected. Culture is a made up of a series of repeated, engrained, and expected behaviors and,...
by e-Patient Dave | Mar 29, 2024
Guest post by long-time SPM member Tracy Zervakis. Participatory medicine involves professionals and patients working together to get healthcare done. When a treatment plan is agreed and chosen, the best outcome obviously requires carrying out the plan – but...
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 | Aug 28, 2023
From shared-decision making, patient-centered care and value-based care to common technology innovations, healthcare players often describe how we aspire healthcare to be in concepts, buzzwords, branding and what has become common lexicon mentioned in conversations...
by Eric Bersh | Jun 6, 2023
My brother Jacob was born with a chronic neurological condition that caused him permanent physical and mental disabilities. As the only other child in a single parent family, I was often with Jacob during his frequent hospital stays and doctor visits. It is through...
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 | 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 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 | 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 Eric Bersh | Apr 27, 2022
Curled up on her hospital gurney but unable to sleep, the middle-aged Latinx female trauma patient sighed, “I am tired of being tired.” Before daybreak, “Rosa” (not her real name) had arrived at work to open her New York restaurant but was interrupted by an intruder...
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 | 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 11, 2022
As a leader in patient advocacy, I am often asked to speak on the topic of patient centricity and patient advocacy from the biotech/pharma perspective. What do we mean by patient centricity or when we say that patients are at the center of what we do or patients are...
by Eric Bersh | Jan 5, 2022
When Regina Bertlich was diagnosed with metastatic pancreatic cancer, her doctor referred her to palliative care and never told her that clinical trials could be an option. Regina’s daughter, Ines Bertlich, MD, decided to do her own research. Ines and her father and...
by Vasilliki E. Kalodimou, MD | Nov 1, 2021
Working as a health care researcher can be both rewarding and challenging, as daily we need to remember our commitment to our patients’ well-being and ethics to support treatment decisions. We are all familiar with deplorable abuses of human subjects in research, such...
by Jay Spitulnik | Sep 7, 2021
Throughout the history of the Society for Participatory Medicine (SPM), the discussions have focused on two groups of participants. The first is the patient and caregivers. SPM’s work, as illustrated in the Manifesto, has been dedicated to ensuring that members of...
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