e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
Playing the Waiting Game While Living with a Rare Disease
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...
Family Caregivers and Care Partners: An Essential, but Underserved Part of Participatory Medicine
Informal, unpaid family caregivers and care partners are increasingly the backbone of participatory medicine. My father was a physician, but when he was seriously ill, it was really on my mom and me to advocate for him, understand the constellation of conditions,...
Getting “unstuck” after a life-changing medical diagnosis
Editor’s note: Annie Brewster, MD, founder of Health Story Collaborative, and a friend to the Society for Participatory Medicine, has just published “The Healing Power of Storytelling: Using Personal Narrative to Navigate Illness, Trauma, and Loss.” In this excerpt...
Let’s Save the Date and Make Patient Engagement Official in 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...
Zoom Workshop: ‘Learning to FIRST Observe & Listen Without Evaluation’ with Rob Kanzer
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 --...
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/ 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...
