Farming, Ranching, Research: Patient Engagement on the High Plains.

Abstract

T welve years ago my husband and I were happily content with the challenges and rewards of tending our fourthgeneration dryland wheat farm. I was also teaching English reading at the local community college. Then we were asked to be part of a rural healthcare research team—to participate not as study subjects but as community-based researchers. At that time, the concept of engaging patients in the research continuum and as co-researchers was considered experimental and, by some hardcore scientists, a bit quaint. Twelve years ago, I knew little about patient engagement and nothing about medical research. If asked, I would have said I was an engaged patient, informed about my own health. I stayed abreast of research as it was presented in the popular media. I maintained an active relationship with my primary care provider, and I felt empowered to ask hard questions, advocate for myself or my family, and demand some control over my health care decisions and actions. But, bottom line, I was and am a patient; I am not a researcher. Yet, here I am, commenting on today’s research on patient engagement. Engaging patients as co-researchers—co-creators, coinvestigators, partner advisors—is crucial to the successful translation of medical discoveries into everyday clinical practice. When I first had an opportunity to ask questions that matter to my community, to ensure that the participatory research process met the needs and personality of my small town, to improve the health of my community, I was a bit skeptical...and intrigued. I joined the Community Advisory Council of the High Plains Research Network (HPRN C.A.C.), created to complement the practice-engaged research of our university-based research network. The HPRN was collaborating with doctors’ offices and clinicians in rural and frontier Colorado, but something was missing. Research was happening, but the questions were not relevant to primary care practice or their patients, and the answers were not aligned with the way we in the community lived our daily lives. The missing piece was the patient voice and the real-life context that it brought to the research. Without this context, the research lacked local relevance and was, consequently, low impact. This is where I entered the world of patient-engaged research. For the past 12 years, I, along with a group of about 18 other community members, have straddled the fence between the university research world and our everyday lives in rural eastern Colorado. The High Plains Research Network is not alone. Patient, stakeholder, community member, and practice engagement has taken off and is now the norm in many academic settings. The National Institutes of Health’s Clinical Translational Science Awards encourage and support patient-engaged participatory research. The Patient-Centered Outcomes Research Institute (PCORI) requires active patient and stakeholder engagement in the research it funds. Patient engagement is a broad continuum of activities and participation, from fully engaged community-based participatory research (CBPR) to the less engaged individual patient representative sitting at an annual board meeting. While there is a robust body of literature on CBPR, less has been studied and disseminated on the rest of patient engagement. The two terms are not interchangeable. CBPR is one type of patient engagement. Patient and stakeholder engagement in patient-centered outcomes research (PCOR) falls along a broad continuum of engagement and participation. Common key elements are found across the continuum; however, the rest of patient engagement includes a wider variety of methods, locations, and research topics. The work of Forsythe and colleagues signals an important milestone in the progress toward more genuine patientengaged research. They studied the first group of PCORI pilot awardees, measuring patient engagement efforts actually occurring in the projects. They gathered data on the level of engagement, length and nature of engagement, facilitators and barriers to engagement, and how engagement impacted the research. This report provides an early understanding of the range of patient engagement strategies, activities, and lessons in PCOR. Their report is a starting point for patient engagement in the PCORI research portfolio and confirms key tenets that the HPRN C.A.C have found critical for success. Several key components of patient engagement are described. First, patients and other stakeholders can and should be engaged early and often. Successful engagement is not a JGIM