Evaluating patient and stakeholder engagement in research: moving from theory to practice

Abstract

Despite the growing demand for research that engages stakeholders, there is limited evidence in the literature to demonstrate its value -or return on investment. This gap indicates a general lack of evaluation of engagement activities. To adequately inform engagement activities, we need to further investigate the dividends of engaged research, and how to evaluate these effects. This paper synthesizes the literature on hypothesized impacts of engagement, shares what has been evaluated and identifies steps needed to reduce the gap between engagement's promises and the underlying evidence supporting its practice. This assessment provides explicit guidance for better alignment of engagement's promised benefits with evaluation efforts and identifies specific areas for development of evaluative measures and better reporting processes. Keywords: comparative effectiveness research • evaluation • patient engagement • patient-centered outcomes research • PCOR • review • stakeholder engagement BackgroundEngagement of patients and other healthcare stakeholders (herein, stakeholder partners) is increasingly recognized as essential to patient-centered comparative effectiveness research (CER), which is intended to answer questions of importance to patients and their caregivers [1]. Often described as researchers doing research with patients, rather than for, at or to them [2][3][4], patient-engaged research implies a level of involvement that extends beyond the role of research subject [5]. This shift has been fueled in part by the 2010 creation of the Patient-Centered Outcomes Research Institute (PCORI) by Congress with the passage of the Patient Protection and Affordable Care Act. PCORI is committed to producing and promoting high-integrity CER that is 'guided by patients, caregivers, and the broader healthcare community.' [6].The PCORI Methodology Report states that patient engagement can include: defining topics and formulating study questions, identifying a study population and choosing interventions, comparators and outcomes, developing optimal strategies for recruitment and retention of study participants, conducting a study and analyzing results and disseminating research findings into clinical practice [7]. Generally, the value of engaging stakeholder partners in research is that it can help reorient and improve the research enterprise, reduce clinical uncertainty and speed adoption of meaningful findings that hold great promise with the ultimate goal of improving patients' care experience, decision-making and health outcomes [6].Despite the growing interest in and demand for research that engages stakeholder partners -or, 'research done differently,' [8] there is limited evidence in the published literature to demonstrate the value -or return on investment -of this engagement. This evidence gap is reflective of a general lack of evaluation of research engagement activities. In fact, the majority of published research with a stakeholder partner engagement dimension does not include an evaluation component [9][10][11]...

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