Never Delegate Understanding

Patrick Gee, who himself underwent years of dialysis and a kidney transplant, discusses advocating for people with kidney disease, people of color, and people in his community in Virginia who lack access to care and information about their health.

After her infant son suffered due to a succession of medical errors, Sue worked tirelessly to prevent this from happening to others, starting by writing letters to the health care regulatory bodies until she and a group of mothers had formed a nonprofit and put out guidelines for the regulatory bodies to follow. In the midst of all of this, Sue’s husband was misdiagnosed as having a benign tumor, when it was later discovered to be a malignant sarcoma. With this she redoubled her efforts to lead us to a safer health system.

Dana Lewis was diagnosed with Type I Diabetes at 14. She struggled as a teenager with the cumbersome equipment, but struggled more as a college student without parents to help wake her when her glucose was out over range overnight. Since then, her now-husband and others along the way have helped her to create an open-sourced software for a pancreas system that she uses every day, which automatically adjusts the insulin dosing on its own, in response to her changing glucose levels. The biotech industry is still catching up to the technology that patients have pushed forward on their own.

Christie Mangir, breast cancer survivor, entrepreneur, and patient advocate, joins Harlan Krumholz to discuss what it means to be the “perfect patient.” Throughout her treatment, Christie felt pressure to do everything the doctor told her. At the same time, through a system of keeping spreadsheets on her symptoms, and a commitment to asking questions and seeking information, Christie became her own perfect patient—one who is engaged, informed, and self-advocating. Since her treatment, Christie has helped other patients dealing with the diagnosis and the decisions, self-care, and many unknowns that it comes with.

Andrea Downing is living with a BRCA1 mutation, which puts her at a high risk for cancer, the same disease that she saw her mother and grandmother endure. Although at first her diagnosis created a pervading feeling of loneliness, Andrea has found a group on Facebook, the BRCA Sisterhood support group, to share information and break through the isolation. But as much as Andrea praises her own and other patient community groups, she worries that social media hosts, such as Facebook, pose a threat to the safety of these groups and their health data. In this episode, Andrea talks about what it means to be a previvor, how her Sisterhood empowered her, and where she is now in the fight to secure patient community groups.

When e-Patient Dave was diagnosed with kidney cancer, he was given an estimated 24 weeks to live. Now, twelve years later, Dave sits down for an interview with Harlan Krumholz in which he delves into just how he became an engaged patient, and what “e-Patient” means to him. Dave’s journey began when he first joined an online patient community as a cancer patient. But from being featured on the cover of the Boston Globe in an effort to access his health data, to successfully launching his first book, Let Patients Help, to writing his upcoming book on Super Patients, Dave continues to be a driving force in the e-Patient movement.

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.

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.