Background: New medical discoveries on chronic diseases are rapidly emerging. Results from these studies may improve health management and health outcomes for populations disproportionately affected by chronic diseases, but they are primarily disseminated through scientific journals.
Proposed Solution to the Problem: There is a need to translate new research discoveries in formats and on platforms that can be disseminated to patients managing chronic disease, and because little is known about how to engage and activate patients managing rare chronic disease in translation dissemination research, the project team will target this population as a model to guide future efforts to address this void with other chronic diseases.
Objectives: Expand an existing academic-patient-community partnership to include stakeholders with interest in both rare and common chronic diseases and build their capacity to partner in the process of developing a patient-centered research translation dissemination model to increase the diffusion of new medical discoveries to populations managing both rare and common chronic diseases.
Activities: For the proposed engagement project, the team will: (a) identify barriers and challenges associated with research stigma, suspicion, and mistrust; (b) identify solutions to address barriers and challenges; (c) train stakeholders on health literacy and comparative effectiveness research methods; (d) review CER and refine criteria to guide the selection of research studies that may be relevant for improving health management and health outcomes; (e) train stakeholders on database access and procedures to select, download, and review research studies using the PCORI portfolio; (f) pool selected CER studies and rate cultural appropriateness and relevance for translational dissemination; (g) select up to three studies and conduct a focus group to translate into relatable, easy-to-consume documents; (h) identify formats and platforms for disseminating translated new medical discovery articles through community engagement studios; (i) engage a dissemination workgroup to design and develop formats and platforms based on stakeholders’ input; and (j) beta test dissemination products with network; adapt and refine based on feedback.
Projected Outcomes and Outputs: Summary of translational dissemination procedures and protocols, including translated documents as templates to guide the scale-up of translation dissemination module for widespread diffusion.
Patient and Stakeholder Engagement Plan: The team will engage SCD patients and stakeholders using fundamental principles of trust, honesty, partnership, transparency, co-learning, and reciprocity. The team will establish a representative team to ensure that relevant voices are included and that capacity building needs are identified with strategies and approaches to guide future translation of research dissemination practices and procedures. Patient partners will have the opportunity to participate in all phases of the project. In addition, the team will draw on the expertise of an infrastructure established through the TN-SCD Network, namely, patient partners and community stakeholders, to provide input on barriers to dissemination, prioritize dissemination platforms and strategies, and develop a plan for future dissemination.
Project Collaborators: Vanderbilt University Medical Center will partner with Georgia Southern University and the Sickle Cell Foundation of Tennessee. All key personnel were collaborators on the previous PCOR TN-SCD Network Project.