According to the National Institute of Mental Health, 1 in 17 Americans live with a serious mental illness. Southern Illinois Healthcare Foundation (SIHF) psychiatrists have heard our patients repeatedly express the challenges to care that they face. These include affordability of medications, barriers to acquiring and taking medications, challenges with accepting their diagnosis, and feelings of a loss of dignity. SIHF will center all aspects of research on a partnership with patients in order to direct research efforts into areas that make a difference for them. The findings gained will drive improvements in our approach to care and in turn improve outcomes for our patients.
SIHF is a Federally Qualified Health Center with a patient majority board. It has a Federal Wide Assurance, and years ago adopted a “Statement of Community Values” that guides patient majority board members in reviewing all requests to conduct research on SIHF patients. SIHF currently lacks the internal capacity to conduct research because staff is oriented to service provision. Tier I funding will be used to establish a patient advisory council and a memorandum of agreement between SIHF, Touchette Regional Hospital, and Southern Illinois University at Edwardsville’s School of Pharmacy. This group commits to engaging patients in every step of the research process while building the additional research capacity to submit a proposal for Tier II support. Patients will identify the topic, and provide input from their perspective on study design, consent forms, interpretation of results, evaluation of the engagement process, publication, and dissemination.