During her first year as chair of the American Thoracic Society’s Public Advisory Roundtable, Donna Appell, RN, founder and president of the Hermansky-Pudlak Syndrome Network, announced that her organization would jointly fund a research grant with the ATS to study the mechanisms underlying the rare disorder that leads, among other problems, to fibrosis of the lungs. The return on that investment, Ms. Appell says, has been “life altering.”
In the 10 years since receiving the grant, Lisa Young, MD, went on to receive two major NIH grants, successfully propose that HPS be part of the NIH’s Rare Lung Disease Consortium, and direct the efforts of four national HPS Centers of Excellence. Concurrently, Jesse Roman, MD, another ATS member Ms. Appell met though PAR, has opened a center for pulmonary fibrosis program in Puerto Rico, where about half of all HPS patients worldwide live. “None of this would have happened if we weren’t part of PAR,” says Ms. Appell, whose daughter has HPS.
In its relatively short history, PAR has transformed the American Thoracic Society and placed it at the forefront of a trend to integrate the patient perspective within professional medical societies like the ATS. The idea for PAR belongs to William J. Martin II, MD, who was president of the ATS in 2000-01, its first year as an organization independent of the American Lung Association.
Several years before that, Dr. Martin worked as a health policy fellow in the U.S. Senate. There he saw how effective patients and their advocates could be in lobbying for more biomedical research funding and changes to improve health care delivery. As ATS president, he wanted to bring their passion and sense of urgency right to the ATS. Fortunately, the ATS Board of Directors unanimously endorsed his idea.
Patients Bring Passion, New Perspective
“Having patients in the center of the ATS is critical because I think it perturbs the ATS,” Dr. Martin, who is dean of the College of Public Health at the Ohio State University, says. “We should feel the sense of urgency that patients feel. It should wake us up in the middle of the night and cause us to think critically and to think big.”
Dr. Martin also wanted PAR to bring a public health perspective into the ATS by including chapters of the American Lung Association and other groups that reflect the patient perspective in its entirety. His idea was to broaden the Society’s mission to encompass “the entire community and how we can prevent disease”—an idea very much rooted in the ATS’s origins in the public health effort to control tuberculosis.
Today, PAR is central to the mission, governance, and activities of the Society. Hear more from current ATS President Marc Moss, MD.
ATS: Ahead of the Curve
All of these activities have made the ATS a leader in a growing trend among professional medical groups to engage patients in a way that can lead to more patient-centered care. “The ATS has incredible foresight to have a public arm before it was ever ‘the thing to do,’" Ms. Appell says. Michele Manion is the founder and executive director of the Primary Ciliary Dyskinesia Foundation, another PAR member, who for many years chaired the National Institutes’ 140-member Health Coalition of Patient Advocacy Groups. She says, “The ATS offers patient organizations the ability to engage with a professional society that virtually no other society does. It's very clear that the ATS wants the interaction and supports it.” Kari Luther Rosbeck, who, as president and CEO of the Tuberous Sclerosis Alliance, has worked with other medical societies, due to the number of organ systems tuberous sclerosis affects, says that she has held PAR up to these organizations as a “model for how a medical society works with advocacy groups.” While the organizations she works with have formed patient councils, she says, “none has taken the people on the council and put them on working committees, so you truly get the patient voice throughout the infrastructure of the organization the way the ATS has.”
A Holistic View of Patients
ATS members say they benefit from the involvement of patients in the Society’s activities. Gregory Cosgrove, MD, has participated in both “Lung Disease Week” on pulmonary fibrosis and the “Meet the Expert” forum, organized by the Roundtable. As a result, he feels he better understands how disease impacts his patients “in a more holistic way.”
“You can only get that if you have their voice incorporated into a lot of the discussions and decisions that occur,” he says. Even though physicians and other health care professionals talk to patients every day, they may perceive patients through a narrow, subspecialist lens. Dr. Cosgrove, who is medical director of the Pulmonary Fibrosis Foundation and associate professor of medicine at National Jewish Health, cites as an example the results of a patient survey the foundation conducted. While shortness of breath and cough were assumed to be the most limiting factors in these patients’ lives, respondents indicated that severe fatigue was their most pressing health issue. By bringing patients into the ATS, he says, we are “more likely to develop treatments that satisfy goals important to patients that are not yet perceived by physicians.”
The patient perspective is also inspiring. Over the last decade, 150 patients have opened scientific symposia at the International Conference by telling the audience about their journey with their disease. “It’s highly motivating, especially for the basic scientists,” says Francis McCormack, MD, who, as a new physician-scientist at the University of Cincinnati in the 1990s, began a highly productive collaboration with the LAM Foundation, an original PAR member, that resulted in the first approved drug for the disease. “Many times, PhDs have never interacted with the patients their research is intended to help, and to have the patients get up there and give a testimonial about their journey with their disease can be very moving.”
Even seasoned clinicians come away inspired. Marianna Sockrider, MD, DrPH, associate medical editor for patient education at the ATS, recalls listening to a young woman with cystic fibrosis. “Despite hours of treatment, she still found time to be successful in college and her career,” says Dr. Sockrider, who is associate professor of pediatrics at Baylor College of Medicine. “We sometimes lose track of the fact that people have to build their lives around managing a chronic disease.”
Compelling on Capitol Hill
Patients and their advocates are equally compelling when it comes to lobbying Congress and other government officials to increase funding for research into pulmonary, critical care, and sleep medicine, and to implement public health policies that prevent respiratory disease in the first place.
By putting a face on the disease, the meetings stand out from the revolving door of constituents seeking the government’s support. “As soon as you tell an elected official or their staff member that you are representing a patient voice, they focus on how the disease affects patients and how advances in therapy can make a real difference in their constituents’ lives,” says Greg Porta, founder of the Children’s Interstitial Lung Disease Foundation. “It sets a different tone for these meetings.”
Editor’s note: This is the first part of a two-part article. The second part appears in the November edition.
Last Reviewed: October 2017
