July/August 2008 Best Practices: Giving patients a voice
The American Thoracic Society brings a patient focus to its annual physician conference
By Linda Seid Frembes
Medical conferences are information-intense events that aren’t usually open to patients. Physicians and researchers converge at the conference ready to absorb as much research and lecture information as possible, but what’s often lost is the patient perspective on medical care. To address the lack of patient involvement in its conferences, the American Thoracic Society (ATS) formed its Patient Advisory Roundtable (PAR) in 2001 to serve as the patient voice within the organization and at its annual conference.
As a society of respiratory physicians, ATS exists to decrease mortality from respiratory disorders and life-threatening acute illnesses through a combination of research, education and advocacy. The PAR consists of 15 patient groups that advocate for respiratory patients and their families, and brings the patient perspective to all ATS activities. “Since PAR was created, we’ve had patients involved in conference sessions and in committees that write medical and clinical guidelines,” says Brian Kell, Senior Director of Communications and Marketing for ATS. This includes patient input on guidelines authored for the World Health Organization on tuberculosis.
PAR group representatives are welcome to attend the annual conference as attendees, and often participate as patient-speakers. In 2007, ATS PAR sponsored its first-ever, free patient event colocated with the ATS International Conference in San Francisco. The topic-driven event was open to patients with any lung disease, regardless of whether they were attending the International Conference. It brought together pulmonologists and patients to exchange information and to allow patients with similar ailments to share their experiences. The PAR also gave out registrations to patients and paid for patient speakers’ travel costs. “Creating a patientfocused event follows the overall trend in medicine of patient partnerships,” Kell says. “Patients can be effective advocates, especially for legislation.”
Teresa Geiger Barnes, who helped organize the PAR’s 2008 “Breathing Better” event in Toronto and works for the Coalition for Pulmonary Fibrosis (a PAR member group), says that Dr. Tom Martin, former president of ATS, fostered the event concept so that doctors never lose sight of the fact that their efforts are for the patients. “In 2007, ATS thought it was time to have an event that got patients involved in medical meetings as presenters and attendees, something that would build a sense of community,” she explains.
The 2008 event focused on pulmonary rehabilitation. The programming examined the topic from several perspectives. Four presenters spoke about their experience with pulmonary rehabilitation, followed by a group Q&A session. “A small reception was held afterward for private questions,” Geiger Barnes says. “Some patients came to get a referral to a good doctor or to meet others with the same disease.”
Advertising the event was a challenge because many PAR groups are based in the United States without much reach across the border into Canada. Karen Belgiovine, manager of research programs and PAR for the ATS, notes that much effort was spent contacting Canadian ATS members, the Canadian Lung Association, international partners, local media outlets, and other medical societies to make Toronto-area patients aware of the free event.
The accelerating trend of patient involvement and PAR’s efforts resulted in 15 patientspeakers sharing their experiences with lung disease at 15 sessions at the 2008 annual conference. Patient-speakers presented on panels alongside physicians and experts on major topics such as asthma and chronic obstructive pulmonary disease. “The goal was to attract patients in the Toronto area and have a compelling event to learn about the topic at hand. I think we achieved that,” Geiger Barnes says.
Linda Seid Frembes is a freelance journalist based in Massachusetts. Visit her at www.frembes.com. American Thoracic Society's Strategy
Goal: Bring a patient focus to an annual conference. Objective: Create a Patient Advisory Roundtable and invite members to participate as attendees and speakers at the annual conference. Strategy: Co-locate a free patient event with the annual conference where pulmonologists and patients can meet and exchange information. Tactics: Provide an intimate venue with a public Q&A as well as a reception afterward where patients can access the physician presenters one-on-one. Results: More patient involvement, including patients who spoke alongside doctors at 15 sessions at the 2008 annual conference.
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