Background: The Southeast Regional Clinicians Network (SERCN) is a practice-based research network (PBRN) of Federally Qualified Health Centers (FQHCs) in eight southeastern states. FQHCs provide comprehensive primary care, dental, and mental health services to a disproportionately poor and medically underserved population. All FQHCs are required to have a patient majority board of directors. This patient majority board is often responsible for approval of research projects conducted throughout the network. However, there is little formal research training for these members, and SERCN lacks a patient advisory board (PAB) to guide its work.
Proposed Solution to the Problem: The project team will increase patient engagement and research capacity among patients in its PBRN, resulting in a research agenda that explicitly includes patient research priorities and a PAB for the network that will be integral to project selection, design, and results dissemination. This approach will be effective because it creates infrastructure for patients to be fully engaged in research in the network. To build capacity for the PAB to engage fully as partners in research, the project team will design a layperson-oriented research curriculum.
Objectives: The goal of this proposal is to create infrastructure in the PBRN that enables patients to engage in the full spectrum of the research process. Objectives include:
- Engage patient leaders in the primary care safety net and conduct a needs assessment that will inform the team’s research agenda
- Recruit a key patient stakeholder from each state to establish a PAB and maintain PAB engagement
- Build capacity among PAB members to enable them to participate in the full spectrum of research activities and to define processes for PAB members to partner in each phase of the research.
Activities: The project team will conduct a needs assessment with patient leaders in the research network to understand their needs and values around research; establish a PAB for the research network; and develop and deliver a research capacity building curriculum to the PAB.
Outcomes: Outcomes will include a patient-informed, needs-based research agenda; a social network of patient leaders; a PAB to guide research processes; well-defined procedures for the PAB to integrate into the network’s research activities; and a layperson-oriented research curriculum that can be scaled and disseminated to other research organizations.
Patient and Stakeholder Engagement Plan: Patients who serve on FQHC governing boards approve research projects conducted in the centers, are consumers of health services at the centers, and live in communities served by the organization’s centers. The project team will engage patients who serve on FQHC governing boards via existing relationships with state primary care associations and FQHCs in its network. The team will engage patients via focus groups and interviews, and then eight patients (one from each state) will be recruited as the PAB. This group will refine the research agenda, participate in the layperson-oriented PCOR curriculum, and define specific roles of the PAB along the full spectrum of the research process.
Project Collaborators: Project collaborators will include the primary care associations (PCAs) in the eight states in the research network, which support FQHCs in each state through training, advocacy, and technical assistance. The stakeholders at the PCAs will help connect the team to FQHC patient majority board members.
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