Patients as Teachers Archives

Mighty Casey is entering hospice

by e-Patient Dave | Mar 16, 2023

Update 3/19: We’ve opened a CaringBridge page for Casey, where her support team will post updates. You can subscribe to get notifications and to leave words of support, memories, etc. Anyone can view; posting requires free registration. This news hit us worse...

Patient Design: The Importance of Including Patients in Designing Health Care

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...

Storytelling: Where Compassion is Born

by John Novack | Oct 6, 2022

Editor’s note: In this excerpt from her latest book, Ducks in a Row, Canadian-based author, Sue Robins explains the power of storytelling for everybody invested in health care—patients and clinicians alike. A well-told story, Robins explains, has the ability to...

Playing the Waiting Game While Living with a Rare Disease

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...

Linnea Olson: An Appreciation of a Giant

by John Novack | Dec 15, 2021

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...

Following in the Footsteps of Others to become an Empowered Patient Advocate

by Carly Flumer | Sep 13, 2021

I didn’t want to tell anyone about my diagnosis. I thought my family and a few close friends were enough. But I got brave one day four years ago and posted about it on social media. The outpouring of support was incredible. I thought, if I’m receiving this much...