About 70 million Americans have sleep problems, according to the National Center on Sleep Disorders Research, but you’d never know it by looking at them. There are many symptoms besides sleepiness that people—or their physicians—might not recognize as signs of sleep disorders.
While research has made great strides in understanding the many aspects of sleep, there is much more to be learned and communicated. To improve patient-centered sleep research, a team led by Sairam Parthasarathy, MD, professor of medicine at the University of Arizona College of Medicine–Tucson, has been funded by a $250,000 Eugene Washington PCORI Engagement Award approved by the Patient-Centered Outcomes Research Institute (PCORI).
The Engagement Award—called SLEEP2, which stands for “Strategically Leverage Engage and Empower PCOR in Sleep Disorders,” is meant 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.
Parthasarathy, who also is director of the Center for Sleep Disorders at Banner–University Medical Center Tucson, will be joined on SLEEP2 by Project Sleep president Julie Flygare, JD, and Sleep Research Network members Daniel Buysse, MD (University of Pittsburgh), Clete Kushida, MD, PhD (Stanford University), Susan Redline, MD, MPH (Harvard University,) and Eilis Boudreau, MD, PhD (Oregon Health Sciences University).
“Sleep is a highly patient-centered outcome and this engagement award will enable the Sleep Research Network—with more than 300 researchers from 70 institutions—to get together and perform patient-centered research in sleep and circadian sciences,” says Parthasarathy, who also is the incoming chairperson of the Sleep Research Network, in a release.
The SLEEP2project will focus on influencing sleep researchers to incorporate patient-centeredness in their research studies; create a centralized “sleep-specific” patient-stakeholder engagement resource that can enable sleep researchers to develop and conduct patient-centered outcomes research (PCOR); and develop a series of non-binding guidance documents to promote the dissemination and implementation of emerging findings and methodologies generated by PCOR and patient-centered comparative effectiveness research (CER) in sleep medicine.
The first of four SLEEP2 events was held Oct 7 in conjunction with the Sleep Research Network Conference at the Double Tree by Hilton in Bethesda, Md. “Sleep disorders affect millions of Americans, yet excessive sleepiness often is an invisible and invasive symptom that is under-recognized as a serious health concern in our society,” says Julie Flygare, president of Project Sleep, a non-profit organization dedicated to raising awareness about sleep health and sleep disorders, and a conference speaker. “By bringing patient advocates together as health-care experts alongside other important stakeholders, we will be able to collect invaluable first-hand perspectives of patients and learn together how to better improve outcomes for all those affected by these challenging conditions.”
In addition to SLEEP2, Project Sleep’s current major programs include the Rising Voices of Narcolepsy advocate training program, the annual international SLEEP IN campaign, the Jack & Julie Narcolepsy Scholarship and the NARCOLEPSY: NOT ALONE campaign.
SLEEP2is part of a portfolio of projects that PCORI has funded to help develop a community of patients and other health-care stakeholders who have the knowledge, skills, and partnerships to participate in and advance PCOR/CER.
“This project was selected for PCORI Engagement Award funding for its commitment to improving the capacity for patients and other stakeholders to engage in patient-centered research and its potential to increase the usefulness and trustworthiness of the research PCORI funds,” says Jean Slutsky, PCORI’s chief engagement and dissemination officer. “We look forward to following the project’s progress and working with the University of Arizona to share the results.”
The SLEEP2project and the other projects approved for funding by the PCORI Engagement Award Program were selected through a highly competitive review process in which applications were assessed for their ability to meet PCORI’s engagement goals and objectives, as well as program criteria. For more information about PCORI’s funding to support engagement efforts, visit www.pcori.org/content/eugene-washington-pcori-engagement-awards.
PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and health-care decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.