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...
by Mohammed Mallouh | Jul 14, 2021 |
In 2013 the Institute of Medicine published a landmark 436 page consensus report, Best Care at Lower Cost: The Path to Continuously Learning Health Care in America. Its summary contains the characteristics of a continuously learning system: Note that the second...
by e-Patient Dave | Mar 8, 2021 |
Time for change! The theme of our 2019 conference was #Time4Change. This post kicks off a major 2021 campaign for our Society: the Participatory Medicine Manifesto. At that event we took action: in a design-thinking exercise, attendees crowdsourced the ideas that have...
Urgent – comment TODAY: stop this CMS rule change that suppresses hospital safety dataJune 17, 2022
Collaborative Notes, Engaged Partners, Fewer ErrorsJune 13, 2022
Creating Your Own Self-Advocacy StyleMay 5, 2022
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