e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
The Curse of Knowledge – When Expertise Creates Blindspots in Patient Communication
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...
Trusting Yourself, Trusting Your Care Team: Conscious Partnerships and the Gift of Life
My husband was on a tele-call as I walked past in the background quiet, as if a mouse. He got off his call and asked “So?” I exclaimed “It’s positive!” He could hardly believe it, I acted so calm. I had already intuitively had a sense—I was pregnant. We were ecstatic,...
How Reception Areas can Open Doors to Better Health
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...
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...
