PCORI Engagement Conference unites scientists and advocates to make sleep research more patient-centered

November 15, 2016

The Strategically Leverage Engage and Empower PCOR in Sleep (SLEEP2) project held its first conference on October 7th in Bethesda, Maryland. SLEEP2 is a new project co-led by the University of Arizona, the Sleep Research Network, and Project Sleep and is funded by the Patient-Centered Outcomes Research Institute (PCORI). SLEEP2 aims to engage patients, scientists and other stakeholders as partners across the entire span of sleep research, from topic generation to conduct of studies to disseminating and implementing research findings.

Project Sleep founder Julie Flygare, JD delivered the first keynote presentation, speaking about her experience living with narcolepsy and the importance of the patient voice in research. The audience (mostly composed of scientists who conduct research on sleep disorders) was moved by her talk, including PCORI Executive Director Joe Selby, MD, MPH:

Rebecca Fuoco, MPH delivering talk on patient-centered research communication

Rebecca Fuoco, MPH delivering talk on patient-centered research communication

Project Sleep consultant Rebecca Fuoco, MPH gave a presentation on making sleep research communication more patient-centered. Recommendations included using clear and people-first language, providing lay summaries, and amplifying the patient voice. After her talk, Deputy Editor-in-Chief of the journal SLEEP Daniel J. Buysse, MD, announced that the journal would work with Fuoco and Project Sleep to implement improvements to the journal’s author guidelines.

A patient engagement panel was led by pulmonary fibrosis advocate Teresa Barnes and sleep apnea advocates Carolyn Aird and Nancy Callicotte. Among the topics discussed by the panel was patient-centered research led by SLEEP2 principal investigator Sai Parthasarathy, MD that pairs patients newly diagnosed with sleep apnea with experienced CPAP users (“peer buddies”) who can share their success stories, enthusiasm, and practical tips. Callicotte detailed her experience as a peer buddy in the study.

Other highlights included:

  • A talk by Joe Selby, MD, MPH (Executive Director of PCORI) on patient-centered approaches to managing multiple chronic conditions
  • A mock review of previously funded PCORI grant proposals
  • A talk by Darrell Drobnich (CEO, American Sleep Apnea Association) about partnerships and social media outreach to advance patient-centered research in sleep
  • A talk by Jon Puro, MPA:HA (Research Informatics Scientist at Oregon Community Health Information Network) about PCORnet, a national evidence generation system in which researchers can now access, under strict privacy and security protections, large sets of health and healthcare data gathered in real-world settings, such as clinics and hospitals.

Project Sleep looks forward to participating in the next SLEEP2 conference in June 2017 in Boston, Massachusetts.

Julie Flygare, Joe Selby, and Sai Parthasarathy

Julie Flygare, Joe Selby, and Sai Parthasarathy

 

1 Comment. Leave new

So I just sent a novel sized email outlining the need for a strategic approach involving doctors and scientists so that we can be heard and actually start getting some results and stop suffering being Treated like outcasts etc. now I’m exploring your website and it’s.. WOW this is awesome! Way to go Julie!

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