The patient perspective is paramount to our work at the American Thoracic Society. Since 2001, the ATS Public Advisory Roundtable (PAR), along with PAR partners comprised of various patient advocacy groups, has opened the Society to those most personally affected by the diseases we research and treat: patients.
Our work with PAR is varied. The ATS annually publishes a book of essays written by patients, Patient Voices, and recognizes Lung Disease Weeks at the ATS throughout the year to highlight the research and treatment breakthroughs (and challenges) faced by those fighting lung disease. The patient focus is perhaps most evident at the annual ATS International Conference where PAR facilitates patient programs, such as the Meet-the-Expert patient and family forum, PAR Symposium, and several dozen scientific sessions. The impacts of these experiences stretch from inspiring investigators and stimulating new research, into shaping ATS advocacy programs.
However, that is not where the PAR contribution to ATS members needs to end.
In fact, thanks to our PAR partners, ATS members have access to many disease-specific resources for researchers and practitioners These resources include everything from free CME and research grant opportunities (including fellowships!) to patient-registries of potential study participants. The large number of patient-activists involved with these groups mean that these organizations are able to provide our members with opportunities to learn from focus groups, surveys, and research publications that focus on the patient voice. Many of these organizations have affiliations with other patient groups, creating additional opportunities for networking and collaboration. Some partners are also able to lend assistance with advocacy and awareness-raising.
PAR and its member resources represent a truly unique benefit of membership in the ATS, reinforcing the connection between researchers, practitioners and patients, and aligning us all in our mission to help the world breathe.
Below is a brief preview of the resources some of our PAR partners offer. To learn more, visit them directly or contact Courtney White, director, Patient Outreach, at cwhite@thoracic.org.
- Focus groups/surveys
- Clinical Studies
Alliance of Sleep Apnea Partners (ASAP)
- Network with peer societies
- Open-access medical journal
Cystic Fibrosis Research, Inc.
- Grants and fellowships
Foundation for Sarcoidosis Research
- Clinical Studies Network
- Grants
- Grants/educational funding
- Free CME
PCD (Primary Ciliary Dyskinesia) Foundation
- Network of expert research and care centers
- Clinical registry
- Big data and mobile technology to increase awareness of global pulmonary hypertension
- Digital marketing
- Grants
- Patient registry
- Grants
- Preclinical consortium
- Clinical consortium
- Natural History Database and Biosample Repository
Other PAR members include:
Hermansky-Pudlak Syndrome Network, Inc.