Background: While trialists show growing interest in methods to involve patients as advisors, there has been less focus on patient-engaged research in evidence synthesis and little practical guidance about how to involve patient perspectives in systematic reviews.
Objectives: To explore optimal methods to engage patient advisors in systematic reviews, from idea generation and methods planning to results interpretation and dissemination.
Methods: The Veteran Affairs Evidence Synthesis Program has a co-ordinating center and four hubs co-located within large research centers. Three hubs have patient research advisory councils. This structure offers a unique opportunity to build evidence on patient-engaged research in evidence synthesis. We will use a mixed methods approach to develop guidance on the integration of patients as advisors at a national program level and for specific evidence synthesis projects. First, we will conduct a literature scan of patient engagement in systematic reviews. Next, informed by the findings from the literature scan, we will conduct key informant interviews (n = 12) and focus groups with patient research advisors (n = 3). Key informant interviews will query barriers and facilitators to engaging patients and explore ideas for optimizing patient involvement in evidence synthesis. Patient focus groups will explore the understanding of systemic review science, interest in advising on such studies and ideas on how best to garner their guidance. Qualitative data will be thematically analyzed.
Results: We will integrate the findings of the literature scan, key informant interviews and patient focus groups to present at the Cochrane Colloquium and provide practical guidance for meaningful patient engagement in systematic reviews.
Conclusions: This study will outline the key challenges, opportunities and recommendations about how a national evidence synthesis program could systematically seek the input of patient collaborators in the development, implementation and dissemination of evidence syntheses.
Patient/consumer involvement: Patients and other consumers will co-produce this evidence by asking patient advisors how they want to be involved and speaking with key informants representing clinicians, researchers and administrators about barriers, facilitators and opportunities for authentically engaging patients as collaborators in systematic reviews.