Patients Have a Voice at the ATS International Conference

For more than a decade, the ATS Public Advisory Roundtable has led an effort to bring the patient’s voice to many International Conference sessions. At ATS 2018, 16 patients will talk about their experience with critical illness, COPD, sleep apnea, and sarcoidosis, as well as talk about how health disparities have affected them and their experience of palliative care, among other topics.

Attendees find having the patient voice at conference sessions adds an important dimension to hearing about the latest scientific and clinical information.

Kevin Winthrop, MD, DrPH, who has professorial appointments in infectious disease, ophthalmology, and public health at the Ohio State University, says having patient speakers reminds attendees about “what really matters: patients and their quality of life.”

Marianna Sockrider, MD, DrPH, associate professor of pediatrics at Baylor College of Medicine, recalls a talk by a young woman with cystic fibrosis. “Just listening to her hope and excitement about the new therapies that are changing CF really brought it back to what it means to have a chronic disease that has no cure.”

Attendees can also be inspired to search for cures or more effective therapies. “The patient stories can be very moving,” says Francis McCormack, MD, director of the pulmonary, critical care, and sleep program at the University of Cincinnati. “And they can be really motivating, especially for basic scientists who may not interact with patients and get to hear about a patient’s journey with their disease.”

For their part, patient speakers at the International Conference usually have a specific message they want to convey.

For Jeff Goldstein, a lung transplant patient who has spoken at two conferences, the message was simple: More effort should be focused on the new lungs after the surgery. With such an enormous financial investment and human effort involved in getting to the operating room, it makes no sense not to put more resources into improving the five-year survival of lung transplant patients, which is only about 50 percent.

Susan East, who has been hospitalized three times with ARDS, implored health care professionals to make the ICU more human. Ms. East says she was thrilled audience members lined up and talked to her for 45 minutes after her session ended to learn more about her experiences and ideas.

Vijai Sharma, PhD, who was diagnosed with COPD 24 years ago, wanted attendees of a workshop on integrated medicine to know how beneficial yoga can be in maintaining lung function as an adjunct therapy for conventional medical treatment.

For Kathleen Fenning, a lung cancer survivor, the message was: Physicians need to be more proactive in encouraging smokers and former smokers to get CT scans that can detect lung cancer early. “A lot of patients don’t know that screening designed to detect lung cancer at its earliest stages is available.”

Hasmeena Kathuria, MD, heard Ms. Fennig’s talk and recalls how important it was to hear a patient voice the guilt she felt as a smoker and embarrassment she felt when she told people she had lung cancer.

“Kathleen’s story about her diagnosis was heartwarming,” said Dr. Kathuria, an assistant professor of medicine at Boston University. But, more importantly, it also “reminded us that we should think through interventions to motivate smoking cessation in those patients who get screened.”

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