Most rural and urban families affected by sickle cell disease (SCD) have no systematic way to engage in, or lend their expertise to, patient-centered outcomes research (PCOR). The overarching goal of this two-year project is to build the readiness capacity of individuals living with SCD throughout Tennessee (TN) for PCOR and to obtain a population-based representation for PCOR-based initiatives. Establishing a sustainable TN-SCD Network will serve as a conduit for driving patient-centered research and healthcare service agenda. The pre-existing and well-established partnership between the Vanderbilt-Meharry Center of Excellence in Sickle Cell Disease; the Sickle Cell Foundation of Tennessee, a community-based organization; and clinical providers throughout the state provides an opportunity to create the underpinnings for coordinated patient-centered education and linking of SCD stakeholders throughout TN to inform and guide PCOR.
The projected outputs from the project are the creation of a rural and urban sickle cell disease community-based network; facilitation of educational training sessions on research basics for non-research stakeholders; a patient-centered conference and an advocacy conference; and implementation of outreach methods created by the community-based network.
Project collaborators include a patient investigator; regional and local community ambassadors; and patient and stakeholder executive committee members.
^Michael DeBaun, MD, MPH, MS was the original project lead.