Public Advisory Roundtable Amplifies Patient Voices through Forum, Symposium, Speakers

Patient voices will be heard throughout the ATS 2022 International Conference, beginning with the 16th annual ATS Public Advisory Roundtable patient and family education day, and continuing with the PAR Path in the Exhibit Hall, a PAR symposium on inclusion, and patient speakers for several scientific symposia. The participation of the expert panelists for the patient education day is coordinated by ATS Secretary-Treasurer Irina Petrache, MD, ATSF.

Lynn M. Schnapp, MD, ATSF

“We try to incorporate the patient’s voice as much as possible into the Society’s activities throughout the conference and all year long,” said ATS President Lynn M. Schnapp, MD, ATSF. “It’s essential that we keep the patient at the center of everything that we do. I am always inspired when I listen to the journeys of our patients — each story is unique and provides valuable perspectives on approaches to their illnesses.” 

Patients & Experts Forum

With the theme “Improving Lung Health: What’s on the Horizon,” the Patients & Experts Forum took place 10 a.m.-2 p.m. PT during the education day on Saturday, May 14.

“The COVID-19 pandemic has illustrated the power of science. We want to focus on exciting advances that are changing the medical landscape that our communities may not be aware of,” Dr. Schnapp said. “And highlight the opportunities our patients have to ensure all of our communities have access to appropriate care.” 

The morning program included presentations from five panelists, followed by a question-and-answer session. Planned topics included:

  • Regenerative Medicine: Repair and Restore — Darrell N. Kotton, MD, Boston University
  • Improved Therapy: Single Cell Sequencing and Gene Targeting — Jennifer Sucre, MD, Vanderbilt University
  • CFTR Modulator Therapy — Srivas Tirumala, patient speaker
  • Regulatory and Legislative Updates for Patients — Sonye Danoff, MD, PhD, Johns Hopkins
  • The Importance of Patient-Reported Outcomes in Clinical Trials — Joshua Solomon, MD, National Jewish Health
Darrell N. Kotton MD
Darrell N. Kotton, MD
Jennifer Sucre, MD
Jennifer Sucre, MD
Srivas Tirumala
Srivas Tirumala
Sonye Danoff, MD, PhD
Sonye Danoff, MD, PhD
Joshua Solomon, MD
Joshua Solomon, MD

The afternoon also featured breakout sessions with lung disease specialists in multiple areas, providing patients and families with an opportunity to have one-on-one conversations with experts.

PAR Path

In the ATS 2022 Exhibit Hall, the PAR Path will be active on Sunday, May 15. Each of the 12 PAR member organizations will have a booth in the Path where conference attendees can learn about what the organizations do for their patient communities and how they help researchers through grant and scholarship funding.

A dedicated period will be set aside for Student Scholars to meet with the PAR members. Additionally, an invitation-only reception on Sunday will highlight the PAR-funded abstract scholarship awardees, who will present their abstracts.

ATS PAR member organizations include:

  • Allergy & Asthma Network
  • Alliance of Sleep Apnea Partners
  • COPD Foundation
  • Cystic Fibrosis Research Institute
  • Foundation for Sarcoidosis Research
  • Hermansky-Pudlak Syndrome
  • The LAM Foundation
  • National Scleroderma Foundation
  • Primary Ciliary Dyskinesia Foundation (PCD)
  • Project Breathless for Pulmonary Hypertension
  • Pulmonary Fibrosis Foundation
  • TSC Alliance

PAR Symposium

The PAR Symposium, Including All for Respiratory Health, will be from 2:15-3:45 p.m. PT on Monday, May 16. Organized in conjunction with ATS Past President Juan Celedon, MD, ATSF, it will address topical issues such as access to clean air, improving representation in clinical studies, the role of genetics in creating more equitable care, and the manner in which health care disparities have been successfully addressed in Puerto Rico. A patient speaker is included in the panel of presenters.

The 2022 recipients of the PAR Excellence in Achievement Awards also will be recognized during the symposium. Joel Moss, MD, PhD, ATSF, and Jennifer Taylor-Cousar, MD, MSc, ATSF, were selected for this honor for their patient dedication and for research efforts on behalf of patients.

Scientific Symposia Featuring Patient Speakers

Sunday, May 15

A6. #The Future of Telemedicine and Digital Health Care Innovations in Pediatric Sleep and Lung Disease, 9:30-11 a.m. PT, Room 2002/2004 (West Building, Level 2), Moscone Center, patient speaker Kathy Page

A12. The Full Picture: Asthma as a Case Study in the Complexities of Exposure, 9:30-11 a.m. PT, Room 209-211 (South Building, Level 2), Moscone Center, patient speaker Loanis Quinn Goodden

Monday, May 16

B3. What’s New in ANCA-Associated Vasculitis?, 9:30-11 a.m. PT, Room 7-8 (South Building, Exhibition Level), Moscone Center, patient speaker Jennifer Gordon, PhD

B83. Beyond Fibrosis: Patient Centered Treatment and Outcomes in Sarcoidosis, 2:15-3:45 p.m. PT, Room 7-8 (South Building, Exhibition Level), Moscone Center, patient speaker Rebecca Stanfel

B87. Caregivers of Adults with Chronic or Critical Illness: Challenges and Opportunities, 2:15-3:45 p.m. PT, Room 3014 (West Building, Level 3), Moscone Center, patient speaker Kathy Page

B88. Including All for Respiratory Health, 2:15-3:45 p.m. PT, Room 3000/3002/3004 (West Building, Level 3), Moscone Center, patient speaker Jeanie Hanley, MD

Tuesday, May 17

C4. Communicating Prognosis to Critically Ill Patients and Their Families: Challenges and Recommended Strategies Which Consider Culture and Preferences, 9:30-11 a.m. PT, Room 3020/3022/3024 (West Building, Level 3), Moscone Center, patient speaker Erica Courtenay-Mann

C7. The Long-Term Effects of COVID-19 on Patients and Public Health, 9:30-11 a.m. PT, Room 2002/2004 (West Building, Level 2), Moscone Center, patient speaker Shervin Ghanoongooi

C83. Can We Transplant This Patient?, 2:15-3:45 p.m. PT, Room 7-8 (South Building, Exhibition Level), Moscone Center, patient speaker Nancy Lee

Wednesday, May 18

D2. Novel Insights in Alpha-1 Antitrypsin Deficiency, 8:15-9:45 a.m. PT, Room 7-8 (South Building, Exhibition Level), Moscone Center, patient speaker Jon Hagstrom

D3. Conundrums in CTD-ILD, 8:15-9:45 a.m. PT, Room 3-4 (South Building, Exhibition Level), Moscone Center, patient speaker Susan Okuno

D83. The Curious Case of Benjamin Button: Fixed Airflow Limitation in Young Adults. The “Low Flyers,” 12:45-2:15 p.m. PT, Room 7-8 (South Building, Exhibition Level), Moscone Center, patient speaker John Linnell

Lung Disease Week

Throughout the year, the PAR continues its advocacy and education activities through programs such as Lung Disease Week. A specific area of lung disease is highlighted during each event, held monthly from March through November, with resources provided for patients and respiratory health care providers.