Lessons Learned from Developing a Patient Engagement Panel: An OCHIN Report

Abstract

There is renewed interest in patient engagement in clinical and research settings, creating a need for documenting and publishing lessons learned from efforts to meaningfully engage patients. This paper describes early lessons learned from the development of OCHIN's Patient Engagement Panel (PEP). OCHIN supports a national network of more than 300 community health centers (CHCs) and other primary care settings that serve over 1.5 million patients annually across nearly 20 states. The PEP was conceived in 2009 to harness the CHC tradition of patient engagement in this new era of patient-centered outcomes research and ensure that patients were engaged throughout the lifecycle of our research projects, from inception to dissemination. Developed by clinicians and researchers within our practiced-based research network (PBRN), recruitment of patients to serve as PEP members began in early 2012. The PEP currently has a membership of 17 patients from 3 states. Over the past 24 months, the PEP has been involved with 12 projects. We describe developing the PEP and challenges and lessons learned (e.g., recruitment, funding model, creating value for patient partners, compensation). These lessons learned are relevant not only for research, but also for patient engagement in quality improvement efforts and other clinical initiatives.

Patient stakeholder engagement in research: A narrative review to describe foundational principles and best practice activities

“…The article repository contained 976 potentially relevant articles and our search of the grey literature identified 14 additional articles (N = 990), of which 935 (94.4%) were excluded (see flow diagram Figure ). The remaining 55 (5.6%) articles described the conceptual foundations of patient stakeholder engagement in research and best practice recommendations or activities to support these efforts . A full description of the 55 articles can be found in Appendix .…”

“…Stipends or reimbursements for out‐of‐pocket expenses should be viewed as an absolute minimum. While the motivation of patient stakeholders to engage and participate in research is altruistic, it is imperative that if they contribute during the life cycle of a research project, compensation should be equitable, transparent or even customized to the individual patient stakeholder needs …”

Interviews with Patients and Providers on Transgender and Gender Nonconforming Health Data Collection in the Electronic Health Record

“…23 OCHIN is committed to the CHC tradition of patient and clinician engagement, whereby their voices inform decisions made within the healthcare system. 24,25 …”

IMPACCT Kids’ Care: a real-world example of stakeholder involvement in comparative effectiveness research

“…The PBRN, comprised of CHC clinicians and primary care researchers, met regularly to inform research proposals, develop new practice-based research methods, and help interpret results [25,26]. The PEP is comprised of patients who inform all OCHIN research projects and advise on organizational priorities [27]. We leveraged these groups, leaders of community organizations and state policymakers who have contributed to previous OCHIN studies or served on the PBRN [14,28–30] to provide feedback on the research phases listed below.…”

“…The Family Advisory Panel joined with the PEP to provide ongoing advice and guidance including monitoring the study’s progress and disseminating results. The challenges and lessons learned in developing the PEP (recruiting and retaining participants from underserved populations) are described elsewhere [27]. Figure 1 shows the existing and new stakeholder groups for this project.…”