Presentation given at the American Public Health Association (APHA) Annual Conference. Growing interest in clinical research translation to enhance patient outcomes has generated opportunities to include patients in decisions regarding their care. Hence, increased attention is focused on engaging patients in each phase of the research continuum. Incorporating patient-engagement into research that focuses on patients with rare diseases who also live in rural communities has the potential to expand healthcare reach where access to care and access to these populations are a challenge.

We partnered with the Sickle Cell Foundation of Tennessee to implement Community Health Workers (CHWs) to systematically engage patients with sickle cell disease in the TN-Sickle Cell Disease Network, a patient network to increase patient outcomes education. CHWs received training on guidelines and procedures, sickle cell education, and research protocol training. Once trained, CHWs were assigned to urban and rural communities throughout Tennessee and tasked with recruiting patients with sickle cell disease and their caregivers to participate as patient-partners. Core training in research procedures, combined with extended participatory training, led to effective preparation of laypersons who served as conduits between researchers, a community organization, and patient partners.

The CHWs successfully engaged 150 patients with sickle cell disease and 35 executive community members as partners. They also obtained pertinent feedback, including areas of burden associated with disease management, from patient-partners and effectively conveyed these findings to research partners. This method of patient-engagement can be used to develop a scalable process model for replication and implementation in other states.