Patient-Centered Outcomes Research (PCOR): How Can We Optimize Outcomes in CNS Research?

BACKGROUND: Patient-centered outcomes research increases patient involvement in health-related decisions with better information of benefits, risks, and options as it pertains to patient health. Patient-centered outcomes research is valuable for improving patient options in general; however, the vulnerability of patients with certain central nervous system conditions and their variable capacity to consent may pose significant challenges. Methods/review: Authors acknowledge the historical issues and address needs regarding better dissemination of knowledge in central nervous system conditions like dementia, depression, and schizophrenia. Authors propose ethical safeguards necessary to carry out sound patient-centered outcomes research in this unique population. Discussion/recommendations: To facilitate ethical patient-centered outcomes research, researchers must 1) assess the individual's mental capacity to provide consent, 2) determine vulnerability and risk of conducting research in specific subgroups, and 3) consider appointment of legally authorized representatives and/or consent monitors to ensure accurate understanding of research and ongoing direct communication with patients, especially when their future prognosis is unpredictable.