Background: The PCORI study “Integrating Behavioral Health and Primary Care (IBH-PC)” surveys patients with multiple chronic conditions (MCCs) and clinicians who care for them. These survey respondents (~3,000 from across the United States) may increase their capacity for engaging in research. The IBH-PC engagement tool, the Patient Partner Guide, supports the development of trusted partnerships with patients as co-designers of primary care transformation. Although guides exist for engaging patients in quality improvement activities, none are known that support similar capacity-building methods for comparative effectiveness (CER) and patient-centered outcomes research (PCOR).
Proposed Solution: The project team’s MCC engagement specialists’ group (MESG) of patients and stakeholders will create an internet-based environment for engagement in PCOR/CER. In Stage 1, MESG will adapt the IBH-PC guide into the PCOR/CER Partnering Guide (PCPG) to support PCOR/CER-based relationship building, shared leadership, and semi-structured conversations about healthcare research. In Stage 2, MESG will scale the PCPG up for use with ~50 willing survey respondents from the IBH-PC trial who receive or provide care in primary care settings and 10 behavioral health doctoral students. In Stage 3, the community will identify concepts related to MCC research that matter most to them, co-producing a roadmap and agenda for future MCC research. The team will complete the three stages in one year.
- Assess and adapt the existing engagement tool, IBH-PC guide, into the PCPG
- Adopt, scale up, and accelerate the use of the PCPG on an internet-based platform for MCC stakeholders
- Co-produce an MCC research engagement roadmap and research agenda
- Celebrate partnerships for MCC PCOR/CER
- Use the PCPG as a journey map to engage ~65 patients, clinicians, researchers, and doctoral students in skill-building activities and interactive conversations about meaningful CER concepts using an internet-based platform
- Collaboratively adapt the PCPG to meet needs of new stakeholders. Share tools from PCORI (e.g., AIR programs) for increased capacity to engage in PCOR/CER
- Collaboratively produce a summary road map and research agendas to respond to stakeholder MCC PCOR/CER needs and wisdom
- Acknowledge patient and stakeholder expertise to build capacity for PCOR/CER
Outcomes of this project include a needs assessment, a PCOR/CER Partnering Guide, a PCOR/CER Roadmap for MCC, an MCC research agenda for MCC topics, and increased capacity for PCOR/CER for MCC collaborators.
Patient and Stakeholder Engagement Plan:
Patients and stakeholders are involved directly in collaborative production throughout the entire project, initially as redesigners to adapt the IBH-PC guide for PCOR/CER and then as engagement specialists to invite and support former IBH-PC survey responders in the project. All who join will engage in relationship development and capacity-building activities and outcomes.
- Arizona State University, to consult on online engagement and mentor students
- Cystic Fibrosis Reproductive & Sexual Health Collaboration, a PCORI-based team to advise on engagement
- Institute for Patient- and Family-Centered Care, to advise on engagement
- PaCE, a PCORI-based patient and clinician engagement team to join as engagement specialists
- National Committee for Quality Assurance, to advise on engagement and research
- Washington University, to consult on engagement and research