Co-creating the Patient Partner Guide by a Multiple Chronic Conditions Team of Patients, Clinicians, and Researchers: Observational Report

Abstract

Abstract Background Engaging patients as partners can influence research, with rewards and deterrents. The authors are researchers and patient co-investigators who collaborated on a comparative effectiveness, randomized controlled study of a structured quality improvement (QI) process to improve behavioral health and primary care integration for people managing multiple chronic conditions (MCC). Patient co-investigators responded to a gap in available resources to support study clinics in partnering with their own patients in QI and co-created the Patient Partner Guide (PPG). Objective Describe the development of the PPG, its use by clinics undertaking the QI project, and research team partnerships. Design Observational report of study intervention component. Participants Diverse patients and family members managing MCC and members of their primary care clinics. Intervention The PPG component of the study intervention is a five-step workbook providing practical tools and resources to sustain partnerships across clinic QI team members, including patient partners. The process of developing the PPG relied on relationship-building tools that were iteratively assessed, practiced, improved, and incorporated into the PPG under the leadership of patient co-investigators. Main Measures Observations related to PPG use and patient partner inclusion in clinic QI; impact on the research team. Key Results Of 20 clinics, 6 engaged patients as full partners on QI teams. Clinics found resistance in partnering and challenges in using the PPG but valued the material and their partners’ contributions. Similarly, engagement of patient co-investigators in research brought a shift in perspective to team members. The PPG is available and was adapted for use by research teams. Conclusions Engagement of patients and other stakeholders in research can be transformative and productive. Building relationships through meaningful work benefits others, and in turn, the research process. This approach can enhance clinical care QI and may result in substantial contributions to the conduct of research. Clinical Trial Registration https://clinicaltrials.gov/ct2/show/NCT02868983