Building a community-academic partnership for care of individuals with sickle cell disease: The Illinois Sickle Cell Action Network advisory board

Introduction Most patients living with a chronic disease spend the majority of time in their community. This community has an opportunity to provide health communication and promotion, support, and resources. Community-academic partnerships enhance the transition, implementation and adherence to evidenced-based interventions to improve the patients' health. Our team built a community-academic advisory board to enhance the lives of those living with sickle cell disease.

Methods Building upon working relationships, Christian Community Health Center, a Federally Qualified Health Center (FQHC), developed an infrastructure to create, provide and sustain a foundation for sickle cell disease (SCD) and trait education, treatment, and care. Partners with a common interest in improving the quality and accessibility of care for individuals with SCD were recruited through various networking and marketing activities.

Results We successfully formed and actively maintain a well diversified and proactive advisory board to provide oversight for the Illinois Sickle Cell Action Network (ISCAN). Our advisory board includes representation from patients, four FQHCs, Illinois Departments of Public Health and Human Services, four academic sickle cell centers, Illinois Primary Health Care Association, Sickle Cell Disease Association of IL and other community representatives. The ISCAN advisory board meets quarterly and attendance has remained greater than 90%. Subcommittees convene between board meetings to address identified issues and develop plans of action.

Conclusion This community-based/academic partnership has maximized resources and increased quality and accessibility to care. Future directions include recruiting representation from insurance companies, schools, and churches and implementing a sustainability plan.