ATS PAR Empowers Patients

Experts share information with patients and their families during the Public Advisory Roundtable Forum on Saturday.

Experts share information with patients and their families during the Public Advisory Roundtable Forum on Saturday.

Patients and families are central to the mission of the American Thoracic Society. With a theme of empowering patients with technology, experts in pulmonary, critical care, and sleep medicine shared their insights with patients and family members during the Public Advisory Roundtable Meet-the-Experts Forum on Saturday.

Discussions focused on using the Internet to find medical answers, improving patient adherence with continuous positive airway pressure, managing lung diseases in rural areas, and using social media as a tool in smoking cessation. Participants also met with disease experts in breakout sessions to discuss the latest in research, clinical trials, and clinical care. These question-and-answer breakouts focused on alpha-1 chronic obstructive pulmonary disease, asthma and allergy, children’s interstitial and diffuse lung disease, pulmonary fibrosis, pulmonary hypertension, rare lung diseases, and sarcoidosis.

Chris Higgins, Los Altos, California, who was diagnosed with scleroderma in 2013, says he often looks to the Internet for medical information. “I liked learning about how to find reputable websites because there is so much junk information out there,” he says.

Rozzy Hale attended the forum as an advocate for her 6-year-old son, Grant, who is undergoing genetic testing to determine if he has primary ciliary dyskinesia.

“It’s difficult to advocate for ourselves when there isn’t a lot of information and research available, but here, I can learn about what’s happening in research, the tools we need to use, and what we have to look forward to in the future,” she says.

  Experts say the forum experience is equally rewarding for them. “I connect with their stories and see what a difference the work we do in research and clinical care makes for individual families,” says Robin Deterding, MD, Children’s Hospital Colorado, Denver. “It’s important that families have interactions with physicians who are leaders in their fields so they can understand what opportunities are here now and coming in the future.”

Virginia Steen, MD, a rheumatologist at Georgetown University, Washington, D.C., says she always enjoys talking with patients. “That’s part of my passion. This is a great opportunity to be able to reach out to these patients. These are uncommon diseases and uncommon complications, so it’s invaluable for them to get insights from people like me who have the experience,” Dr. Steen says.

Founded in 2001, the ATS PAR is a partnership with organizations representing persons affected by respiratory diseases, sleep-related conditions, or related critical illnesses. The ATS collaborates with these groups to advance shared educational, research, patient care, and advocacy goals.

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