Capacity-Building Toward a Patient-Centered Research Translation Model: Lessons from Sickle Cell Disease Management
Document Type
Presentation
Presentation Date
6-1-2022
Abstract or Description
Introduction: Research discoveries on chronic diseases, such as sickle cell disease (SCD), are seldom translated into practical application for patient consumption. Those managing chronic diseases in rural communities are even more disadvantaged than their urban counterparts, due to limited access to health education, availability of health care services, and confronting challenges associated with navigating health care (Lee et al., 2019). As was evidenced during the COVID-19 pandemic, less than 10% of populations disproportionately represented in chronic disease, have access to efficacious intervention and even fewer are aware of information emerging from research that hold promise to prevent, improve, and enhance health outcomes (Brownson et al., 2018, Kerner et al., 2017, Morris et al., 2011).
Methods: This study—designed in collaboration with stakeholders from the Tennessee Sickle Cell Disease Network (TN-SCDN) and the Sickle Cell Foundation of Tennessee—aimed to build the translation and dissemination capacity readiness of an academic-patient-community-based stakeholder partnership network to improve health management and health outcomes of rural and urban African American residents in Tennessee managing chronic diseases, particularly SCD. To discern existing dissemination capacity readiness and practices, the research team conducted a series of qualitative-focused sessions—a semi-structured focus group (general insight), a community leader-facilitated education forum (research translation-focused knowledge), and a community engagement studio (research dissemination-focused preferences)—to understand patient perspectives more deeply on the challenges of receiving research findings and barriers to using these findings. Community stakeholders received training on guidelines and procedures and research ethics. Each session provided insight for a research dissemination model for researchers to employ. Qualitative sessions, conducted virtually due to the COVID-19 pandemic, included African American adults (N=24) who identified as patients living with SCD or caregivers of a SCD patient. All sessions were facilitated by community stakeholders, who also served as experts in the protocol design process. Sessions were video recorded, transcribed, and summarized into structured memos for the purposes of review and discussion by the research team.
Results: Content analysis resulted in key themes across a variety of dissemination and translation topics; exemplar quotes showcase the lived experiences of SCD patients and their caregivers, with regard to patient-provider communication, comfort understanding of research articles, and methods of implementation for research findings into care practices, including pain management.
Conclusions: Findings bring visibility to issues germane to addressing COVID-19. We also highlight preferred methods of learning about, accessing, disseminating and sharing research findings are also discussed. Unique challenges and advantages of virtual sessions. Future studies will employ and test these findings for the purposes of adapting insight to the dissemination and translation of research involving other chronic diseases.
Sponsorship/Conference/Institution
Society for Prevention Science Annual Conference
Location
Seattle, WA
Recommended Citation
Hanebutt, Rachel A., Velma McBride Murry, Tilicia Mayo-Gamble, Dominique Bulgin, Alexis Gorden, Reginald French.
2022.
"Capacity-Building Toward a Patient-Centered Research Translation Model: Lessons from Sickle Cell Disease Management."
Department of Health Policy and Community Health Faculty Presentations.
Presentation 383.
https://digitalcommons.georgiasouthern.edu/hpmb-facpres/383
Additional Information
Georgia Southern University faculty member, Tilicia Mayo-Gamble co-presented Capacity-Building Toward a Patient-Centered Research Translation Model: Lessons from Sickle Cell Disease Management in the Society for Prevention Science Annual Conference, June 2022.