Progress in Community Health Partnerships: Research, Education, and Action

Abstract:

Background: Active patient engagement in research is critically important, but can be difficult in controversial areas where patients have conflicting perspectives.

Objectives: In this Lesson's Learned report, we describe engagement of patients with divergent views in guiding a controlled interrupted time series evaluation of chronic opioid therapy risk reduction initiatives implemented by a large health plan.

Methods: A nine-person Patient Advisory Committee (PAC) advised the scientific team on the evaluation and reporting of results on diverse outcomes important to patients, including pain and function, opioid use disorder, overdose, motor vehicle accidents, and medically attended injuries. Patients were selected with varied perspectives on opioid prescribing for chronic pain. Multiple strategies facilitated PAC engagement: making room for personal experience; investing upfront in setting the stage for working together including an initial face to face meeting; clarifying shared values; and including individuals skilled in group process and collaboration. PAC meetings were organized separately from regular meetings of the scientific team.

Results: Shared values identified to guide the research were: Safety, respect, autonomy, compassion, knowledge and teamwork. PAC guidance altered key scientific decisions regarding assessment of patient outcomes, doctor–patient collaboration, and analytic approaches.

Conclusions: Separate meetings of the PAC and scientific team enhanced opportunities for patients to influence the study design, analyses and interpretation of evaluation results. Convening a large group of patients with diverse perspectives and experiences was productive and influential in guiding the evaluation. Patient selection and building rapport allowed PAC members with divergent perspectives to work together effectively.