Patient and family involvement is needed to increase the quality and relevance of healthcare research. Involving patients and families is more difficult in some branches of medicine, though, due to the nature of certain disorders and how people with such disorders are viewed. Nowhere is this truer than in the case of mental illnesses and addictions. To address this issue, this project will demonstrate the feasibility and value of involving patients, family members, and other stakeholders in all aspects of the behavioral health research carried out in a leading department of psychiatry. We will expand a Consumer Research and Evaluation Network that has been invaluable in the participatory research of the Yale Program for Recovery and Community Health to “wrap around” the clinical research of Yale’s Department of Psychiatry. This process will involve stakeholders in developing and implementing training curricula to prepare both researchers and patients and families for their respective roles in patient-centered outcomes research.
The projected outputs from this project include expanded membership of Consumer Research and Evaluation Network, development of two training curricula, and establishment a network of stakeholders. This project aims to provide evidence to the field that patient involvement expedites recruitment and increases quality, relevance, and degree to which the research conducted targets the outcomes that matter most to patients and their families, and facilitates more timely and broader dissemination to the field of the new knowledge gained.
Project collaborators include the Connecticut Department of Mental Health and Addiction Services; Recovery United FOR-U (“patient”/peer-run organization); NAMI CT (family organization); Consumer Research and Evaluation Network (CREN); patient liaison and family liaison.