Background: Jacksonville, Florida has a large urban area with a predominantly Black population that experiences major health disparities. UFHealth-Jacksonville serves as the safety-net hospital for this urban core, where poor outcomes are common due to diabetes and other chronic diseases. In 2018, the Urban Health Alliance of Jacksonville was formed to reduce health disparities using a multi-sector, social-determinants-focused, evidence-based approach. However, efforts to incorporate patient involvement have been fragmented and inconsistent.
Proposed Solution: Build capacity to promote the adoption and expansion of PCOR/CER conducted by the alliance by forming a patient-centered research collaborative (PCRC).
Objectives: Provide technical and organizational support to the alliance to convene patients, stakeholders, and community leaders to identify and develop initiatives to reduce health disparities; create a sustainable organizational structure to implement initiatives to reduce health disparities; adapt group decision-making processes with patient/community partners to elicit priority research questions to guide PCOR/CER; create guidelines to incorporate PCOR/CER knowledge/tools within the alliance; and provide the infrastructure for the collection and sharing of data.
Activities: The project team will conduct listening sessions with patients, community members, providers, and other stakeholders to identify key barriers that they believe impact the ability to achieve health equity in this community; solicit solutions to improve health equity and to determine readiness to conduct PCOR/CER; develop the PCRC using a group consensus approach to develop the knowledge, competencies, and abilities of patients, providers, and community stakeholders to be meaningful partners in research; recruit and train citizen scientists using the citizen scientist curriculum developed by UF Clinical and Translational Science Institute; and build a health disparities data center to collect and house health disparities data and reports generated by UF and community members.
- Completion of stakeholder listening sessions and dissemination of findings from listening sessions
- Report assessing the feasibility and readiness to build research capacity to conduct PCOR/CER
- List of patient-generated priority research areas generated from the listening sessions
- Formation of a PCRC that is a community partnership for stakeholder-engaged research
- Development of governance guidelines for a transparent and open process for operating the PCRC
- Implementation of citizen scientist training program
- Development of research questions to be studied
- Health disparities data center available on the website
Patient and Stakeholder Engagement Plan: The project team will engage its clinical and community stakeholders comprised of more than 20 community organizations affiliated with the alliance to recruit individuals to the listening sessions. The team will conduct community listening sessions within key neighborhoods that exhibit predictors of health disparity. During these sessions, the team will identify individuals who may be interested in participating on the PCRC as well as receive recommendations from community partners. Members of the PCRC will collaborate and share leadership in all phases of research development.
Project Collaborators: Alliance community partners, patients, researchers, and providers at UFHealth and other healthcare institutions.