e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
Building a Framework for Authentic Patient Centricity
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...
Let’s Work Together to Help Reduce Barriers to Clinical Trials
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...
Coaching for Peak Performance and Best Health
Coaching, critical to my success in life, art, politics, advocacy. Still need to do my own work & make choices. Listen to a session with one of my coaches, Jan Oldenburg https://health-hats.com/pod153/Â or watch it on YouTube https://youtu.be/4TnT6Pk3TgM or read it...
Healthcare as a Meeting of Two Experts
When I was training to become a clinical psychologist, my supervisors gave me several pieces of great advice. One told me that the psychologist or therapist is the expert on mental health treatment and research but the patient or client is the expert on their own...
Linnea Olson: An Appreciation of a Giant
Pioneers of medical progress are lauded in published articles and by their professional peers. But it is often the patient advocates, particularly those who demanded better treatment, spearheaded clinical trial advances, and bravely took on institutions and standards...
How Empathy, Education, Communication and the PAST Model transformed Sickle Cell Patient Care
In 2004, as a staff nurse at Baptist Medical Center South in Montgomery, Alabama, I cared for a group of pediatric and adult African-American Sickle Cell patients who would come to my medical-oncology unit for treatment. They would stay a few days, get fluids, and get...
Understanding the Impact of Medication Storage Locations on Adherence
The answer is probably not your medicine cabinet. The answer may be your nightstand, kitchen counter, or a variety of other locations in your home. The question is, where do you store your prescription medications? I became interested in medication adherence through...
Video Series: Doctor to Doctor – The Future of Tele-Health
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The Power of Storytelling
In the fall of 2020, in the depths of the pandemic, I attended the Philadelphia Inquirer Telling Your Health Story Conference from the safety of my home. I had volunteered to do the Story Slam at the end of the conference and planned on presenting a piece about caring...
Reflecting on the Importance of Ethics in Clinical Care and Research
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...
The Imperative to Develop the Participatory Patient
A call to action: SPM has failed to create a rigorous, evidence-based model of a participatory patient, so we’ve gotten nowhere in persuading medicine. This must change.
Cost, In Any Other Language
What does healthcare cost mean? I can’t explain it. Listen to Matt Pickering from Nat Quality Forum help us out. Consider serving as a patient rep with NQF. Listen to full 41 min episode here https://health-hats.com/pod145/ YouTube Episode Trailer Proem If a grocery...