Although national research agendas highlight rural health disparities and emphasize the need for patient-centered outcomes, tools and resources employed to promote effective rural patient and stakeholder engagement in research have not been well documented. The project team proposes to identify and implement rural patient and stakeholder engagement tools and resources built upon PCORI best practices and perspectives of rural patients, stakeholders, and researchers.
A three-tiered project structure with collaborative decision making among equal patient, physician, and research partners will be used. A steering committee, composed of two researchers, two patients, and two stakeholders, will be sponsors. The steering committee will identify 10 research teams of approximately five members representing rural patients, scientists, and community or clinical delivery organizations using current research or healthcare connections. Research teams will be convened to support decision making on patient-engagement tools, recommend tool adaptations, and to pilot the tools and resources identified.
A comprehensive participatory planning and evaluation approach will be used, including problem assessment using available literature and PCORI patient engagement experience. Rural research team members will identify constraints and feasibility of engaging rural patients in the research process. The project team will develop causal models to support tool and resource identification. The identification, selection, and planning of patient-engagement tools and resources will be completed during a two-day workshop.
The researchers will collaboratively develop evaluation tools to assess the reach, effectiveness, and maintenance of identified tools and resources. Finally, the team will disseminate its results through clinical and translational research networks focused on rural health.