The Agency for Healthcare Research and Quality (AHRQ) Evidence-based Practice Center (EPC) program engages patients, caregivers, and patient advocates in several steps of a systematic review to ensure that their perspective is included. One place where patients, caregivers, and patient advocates are used extensively is as Key Informants (KIs). An EPC utilizes a panel of patients/patient advocates, researchers, and clinicians in the topic refinement phase of a project to ensure the EPC understands the issues important to these stakeholders. The EPCs use this feedback to refine the topic area's analytic framework; its Patient population, Interventions, Comparators, Outcomes, Timing, and Settings (PICOTS); and the Key Questions that when answered will contribute important information to the health care system.
AHRQ and the EPCs want to understand how to most effectively engage patients, caregivers, and patient advocates in systematic reviews. Therefore, the main objective of the current project was to examine how patients, caregivers, and patient advocates who participated as Key Informants in prior systematic reviews regarded that experience and what their recommendations are for improving that process.
From 2016 to 2017, six caregivers and patient advocates who had participated as KIs in the past were interviewed individually to assess their satisfaction, experiences, and perceptions as KIs. The findings from the individual interviews were summarized and distributed to the participants prior to a focus group discussion that was conducted with all six KIs. As a group, they discussed the findings and reached consensus on recommendations for improving the process. A draft report was circulated to AHRQ and the KIs for review and feedback. The findings and recommendations were presented to AHRQ and the EPCs in a webinar in June 2017. Additional feedback provided during and after the webinar informed this final draft of the report.
RESULTS/RECOMMENDATIONS: All six KIs reported that there was value in participating in the systematic review process, and no one regretted doing so. They agreed that in order to maximize the potential impact and utility of systematic reviews, it is critically important to seek out and include patient perspectives. However, they contended that the various ways in which EPCs have engaged patients in these reviews are not equally effective. The KI participants suggested several strategies that EPCs could use to improve the process for patients, caregivers, and patient advocates, such as: (1) recruit and sufficiently screen patients, caregivers, and patient advocates to ensure they have the relevant experiences/knowledge needed for the systematic review, (2) adequately prepare patients/patient advocates to participate in the review by explaining why they were chosen and how important their perspective is, delineating the expectations for their role, and providing easy-to-understand information about the purpose of the systematic review and what they should be prepared to discuss, (3) educate the researchers and clinicians about the important role that patients/patient advocates play and the valuable contributions they can make to the discussion, (4) select a facilitator with strong communication skills who knows how to engage patients/patient advocates as well as researchers and clinicians, (5) structure the group stakeholder discussion to maximize patient/patient advocate involvement by setting aside a portion of the call specifically for the patients/patient advocates, and (6) keep patients/patient advocates engaged after the group stakeholder discussion by providing them with the timeline for project completion, sharing the results with them, and encouraging and empowering them to disseminate the results to their constituents.
AHRQ EPCs value and include the perspectives of patients, caregivers, and/or patient advocates in their systematic reviews. To maximize patients/patient advocates' participation, the utility and value of their contributions, and their satisfaction as participants, six KIs recommended the use of various strategies for effectively recruiting, preparing, and engaging patients/patient advocates before, during, and after group stakeholder discussions
