Insufficient sleep and sleep disorders, such as sleep apnea and insomnia, affect millions of patients. Both insufficient sleep and sleep disorders lead to sleep-related symptoms that are very important to patients. Sleep, however, is a new field, and there are important gaps that the proposed conferences will address. The main goal of this project is to involve patients, scientists, and all other stakeholders in four conferences over two years that would influence sleep researchers to incorporate outcomes that are important to patients in both their ongoing and future research studies; and create a centralized “sleep-specific” patient-stakeholder engagement resource that can help sleep researchers to develop and conduct research that is important to patients. The conferences will also develop a series of documents that helps others conduct patient-centered research in sleep medicine.
Project collaborators include patient partners from ProjectSleep, and research partners from the Sleep Research Network, specifically the University of Pittsburgh, Stanford University, Oregon Health Sciences University, and Harvard Medical University.
Project outputs: 1) Influence sleep researchers to incorporate patient-centeredness in their ongoing and future research studies; 2) To create a centralized “sleep-specific” patient-stakeholder engagement resource that can enable both junior and established sleep researchers to develop and conduct PCOR; and 3) Develop a series of non-binding guidance documents to promote the dissemination and implementation of emerging findings and methodologies generated by PCOR/CER in sleep medicine.
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Project Resource: Inventory of Current PCOR Studies in Sleep and Preferred Research Outcomes
Project Resource: Targeted Survey Report
Project Resource: Patient and Stakeholder Perspectives on Patient-Centered Outcomes in Sleep Apnea
Project Resource: Survey Results