Engaging Various Stakeholders Leads to Progress in SLEEP-2 Meeting
On Saturday, June 1, 2018, the fourth and final meeting of the SLEEP-2 program took place in Baltimore, MD in conjunction with the APSS Sleep Meeting 2018. Funded through a PCORI Engagement Award, SLEEP-2 is a two-year project co-lead by the University of Arizona, Project Sleep and the Sleep Research Network, aiming 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.
Kicking off the meeting, Laura Forsythe, PhD, MPH, Director of Evaluation & Analysis at PCORI delivered a fantastic keynote on “Engaging Patients in Sleep Research: How to Measure Success?” Dr. Forsythe’s keynote was refreshing and inspiring – showcasing how PCORI measures success from many different angles and involving various stakeholders groups.
Next, Project Sleep’s President & CEO, Julie Flygare, JD, presented on “Patient Reported Outcomes (PROs) & Narcolepsy Research Priorities” — highlighting the progress the group made over the two-year project in advancing PROs in the narcolepsy space, including:
- Bringing people-centered language recommendations to sleep research: Project Sleep’s consultant Rebecca Fuoco, MPH presented on people-centered language recommendations for sleep research. Her work led to her important publication and to the Journal SLEEP updating their author guidelines in accordance to Fuoco’s recommendations.
- The SLEEP2 Narcolepsy Survey data set: which includes over 1200 respondents (collected via Project Sleep’s database and socials over fourth months in 2017). The data is being analyzed, and will likely help to further elucidate patients’ unmet needs. The survey also asked patients what they see as “research priorities” – a question rarely asked directly to those living with conditions.
- Exploring “brain fog” as a possible PRO for narcolepsy: The SLEEP-2 meeting offered an amazing platform for Flygare to discuss the opportunity for researchers to collaborate on a possible study to explore brain fog as a possible PRO for narcolepsy. Two projects are currently underway in relation to this. The cross-disciplinary communications at the SLEEP-2 meeting made this possible.
The meeting also featured an enlightening presentation by Lisa Meltzer, PhD, on “School Start Times and Adolescent Health” and a lively mock PCORI grant review. As always, the SLEEP-2 meeting was buzzing with energy and ideas for cross-collaboration.
In closing, we are extremely grateful to Sai Parthasarathy, MD, of the University of Arizona for partnering with Project Sleep on this terrific PCORI Engagement Award. Special thanks to Cody Havens, MPH for his hard work on SLEEP-2! Last but not least, THANK YOU to the amazing patient advocates, researchers and other key stakeholders who have participated in the SLEEP-2 meeting series. We now consider you friends and co-advocates!
This group truly understands the power of partnership and cross-disciplinary collaboration. It’s inspiring and we believe it’s the future of healthcare, research and medicine.
“Engage patient & stakeholder partners EARLY in process.” End stop. Thank you @PCORI & Dr. Forsythe! pic.twitter.com/R2UaW4kGJg
— Julie Flygare (@RemRunner) June 2, 2018
Julie Flygare speaking about importance of increasing awareness of narcolepsy and symptoms of brain fog at the annual 2018 Sleep Research Network meeting- she is a true tour de force. @AASMorg @AASMPR @ResearchSleep @RemRunner @sai_sparthamd #SLEEP2018 #narcolepsymatters pic.twitter.com/P7TzljT1b2
— Reena Mehra MD MS (@ReenaMehra0203) June 2, 2018
Julie Flygare at @SLEEP2PCOR: It’s frustrating that the research process is not aligned with the urgency of the problem @RemRunner #narcolepsy
— Terra Ziporyn (@terraziporyn) June 2, 2018
