Patient–Stakeholder Engagement for Patient-Centered Research on Sleep Apnea

AbstractIn 2016, many clinicians and investigators in the field of sleep apnea were surprised when a large multinational clinical trial of continuous positive airway pressure (CPAP) therapy failed to demonstrate a reduction in cardiovascular events in patients with sleep apnea and established cardiovascular disease. When a review of the trial data suggested that CPAP nonadherence among trial participants might explain the negative results, it became clear that new approaches were needed. In this Clinical Trials Case Study, we share our experience designing a trial to evaluate a peer-support strategy to improve CPAP adherence. We address how patients were the drivers of research ideas and discuss how the return on investment in such patient-engaged approaches to research can be high for patients, trialists, and, ultimately, public health. Our experience could serve as a road map for investigators who have the same trepidation as we once did to create, engage, and empower a patient-stakeholder committee. Such knowledge could help clinical trials accomplish the stated goals for various chronic medical conditions.