Bray became involved in healthcare when she was a participant in a study for which she received a heart device, and wasn’t notified when the study was ended prematurely. Bray’s condition, Patent Foramen Ovale (PFO) with migraines, greatly improved with her new device. But other study participants hadn’t fared so well. Bray started her own foundation, the PFO foundation, and became engaged with patient groups, research forums and conferences, and research advisory panels. Bray’s mission is to make research not just about the patients in the study, but for the patients in the study.
Category Archives: Never Delegate Understanding
When Sara was 16, she was misdiagnosed as having dystonia, a neurological condition. When she was 32, she was finally diagnosed, correctly this time, with Parkinson’s disease, a neurological disorder that affects movement, speech, and daily life. With little information from her doctor and a newborn in tow, Sara set out on a journey of self-tracking: monitoring her symptoms to help improve her health. In this conversation, Harlan finds out what sparked Sara’s self-care and how others can follow her example.
In the 1980s, Gregg Gonsalves had a key role in one of the first examples of patient empowerment movement worldwide. When the information around HIV/AIDS was scarce, Gregg joined Act Up, the AIDS Coalition to Unleash Power, spawning a career of patient advocacy in public health research and achieving breakthroughs in funding of research that helped improve the care of millions of people with HIV. In this conversation, we go over his motivations to start looking for answers when others weren’t.
After being diagnosed with a high-risk heart condition, Hugo Campos needed to have implanted a device that constantly records his heart rhythm and delivers an electric shock when the rhythm goes awry. Hugo’s heart depends on the device, and yet, when Hugo wanted to understand and monitor his own rhythm, he found that only his doctor and the device manufacturer could see the device alerts and data. In this conversation we hear about Hugo’s journey to understand his health while living with a medical device.
Soon after Liz had a seizure at work, she was diagnosed with a brain tumor. In her personal blog, she started posting about what she was experiencing, with an unexpected consequence: people all over the world started sharing stories like hers. Soon, Liz’s blog, “The Liz Army” became a a place to share experiences, fears, motivations, and much more for a community of people with brain tumors and their caregivers. In this conversation we hear Liz’s story, how her online community began, and the role that all patient communities can play for each person facing a frightening diagnosis.
In this introductory episode, Dr. Harlan Krumholz explains the unlikely source of this podcast’s title and what he hopes this series will achieve.