Outcomes of a sustained multi-disciplinary advisory group in advancing sickle cell care and research

Abstract Objective To describe the outcomes of a sustained, collaborative, long-term multidisciplinary health provider and community advisory group in improving SCD care and research. Methods As part of the NIH-funded University of Illinois Chicago (UIC) project, Improving Sickle Cell Care in Adolescents & Adults in Chicago (ISAAC), a weekly 1-hour Clinical and Research Advisory Group was launched in 2016. It brought together researchers, health providers from four Illinois institutions, implementation science consultants, and community stakeholders. Participants included experts in research, clinical care, and advocacy, who collaboratively refined the ISAAC grant and fostered statewide SCD care coordination. Though ISAAC concluded in 2022, the group continues to meet weekly, supporting ongoing collaboration to improve research and clinical outcomes. Results This long-term collaboration has improved communication among Illinois’ SCD researchers, patients, and advocates. It fosters patient inclusion in research planning, educates the community about clinical projects, and integrates patient perspectives into grant applications and publications. A key early achievement was establishing a Community Advisory Board (CAB), who are engaged in regional and national initiatives. The effort has united multiple care sites, launched the Annual Chicago Sickle Cell Summit, and promoted cross-site education among medical learners. A monthly UIC-based ECHO seminar was established, and collaborative interests have led to an increase in SCD-related presentations and publications. Conclusions This multidisciplinary advisory group has facilitated efforts to improve sickle cell care and education. It has increased relevant SCD education to both providers and patients, involvement in patient-centered clinical research, and direct SCD care efforts across the state.