Researcher-patient partnership generated actionable recommendations, using quantitative evaluation and deliberative dialogue, to improve meaningful engagement

Abstract

ObjectivesTo demonstrate how the 22-item Patient Engagement in Research Scale (PEIRS-22) can be used to develop recommendations for improving the meaningfulness of patient engagement. Study Design and SettingPEIRS-22 previously captured quantitative evaluation data from 15 patient partners in a self-study of the Strategy for Patient-Oriented Research (SPOR) Evidence Alliance. Guided by deliberative dialogue, the current study involved 3 steps: (1) In-depth analysis and interpretation of the PEIRS-22 data produced a lay evidence summary with identified areas for improvement of meaningful engagement; (2) A 3-hour virtual workshop with patient partners and researchers generated initial recommendations; and (3) In two successive post-workshop surveys, ratings by workshop invitees led to consensus on the recommendations. ResultsTwenty-five participants attended the workshops and dialogued on 8 areas for improvement identified from the PEIRS-22 data. Twenty-eight unique initial recommendations led to consensus on 14 key recommendations organized across 4 categories: setting expectations for all team members, building trust and ongoing communication, providing opportunities to enhance learning and to develop skills, and acknowledging contributions of patient partners. ConclusionUsing PEIRS-22 data within a deliberate dialogue elucidated 14 actionable recommendations to support ongoing improvement of patient engagement at SPOR Evidence Alliance, a pan-Canadian health research initiative.