Behind the Scenes: Take as Prescribed

If medical conferences really boil down to improving patient care, shouldn’t patients have a presence and a voice at them?

Author: Michelle Russell       

Michelle Russell

Inclusivity at events takes many forms. Senior Editor and Digital Director Barbara Palmer focused this month on one: how a growing number of medical associations are adding patients to their conferences. Her approach, she shared, was deeply personal in nature. Here, in her own words, she explains why:

As I was working on this month’s story about patient-included conferences, I kept thinking of my friend Ellen, one of the smartest, funniest, and most generous people I know. I met Ellen in college, and we later worked at the same newspaper, although not at the same time. When I came down with pneumonia one winter, Ellen stopped by my house with a dozen books.

Twelve years ago, Ellen was diagnosed with pulmonary hypertension, a condition that can be described as high blood pressure in the lungs. I’d never heard of the disease, and few others had — in 1987, there were only 187 PH patients in the U.S. enrolled on the National Institutes of Health registry. The news filled me with fear and dread, although Ellen kept being her droll self. At the time there was only one treatment for PH and life expectancy for those diagnosed was just a few years, at best.

I called Ellen, who now lives in Houston, the other day. She’s alive today, she told me, because of the new drugs that have been developed since her diagnosis. And she is thriving, partly because of the relationships she’s developed through the Pulmonary Hypertension Association (PHA).

PHA has a uniquely collaborative relationship between doctors and patients — it was founded in 1990 by four PH patients who met around a kitchen table. (Ellen has seen that very kitchen table, she told me, because it was on display at a PHA conference.)

This year’s conference, the 2018 International PH Conference and Scientific Sessions, will bring 2,000 patients, healthcare professionals, and caregivers to Orlando. There is a medical track, where patients are welcome to attend sessions, and a patient track. Childcare is available, as well as sessions for caregivers. “People are pretty amazed that it is so patient-oriented and patient-led,” Ellen said.

Not long ago, Ellen and a Houston friend with PH took part in a 3 a.m. videoconference with a group of doctors and patients in Saudi Arabia. In the Middle East, a diagnosis of PH is a matter of shame, Ellen said. “You don’t talk about it, and certainly not with strangers.” Ellen and her friend spoke, she said, “about how much it meant to have friends who we could talk with about our symptoms and progress, the pains in the butt. People who really understood what it is to have this.

“It was as much a cultural introduction to the doctors,” Ellen said, “as it was to the patients, that it might be helpful for patients to talk with one another.”

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