A previous post described the ways disparate fields have embraced engagement and operationalized engagement-oriented approaches to research; the last post then served to detail ways that broader scientific, funding, and policy climates have helped to facilitate the growth and maturation of both engagement practice, and the newly emerging engagement science. These posts reflected on different forms of engagement and the historical narrative shaping these differences; the observed facilitators of effective engagement; and the value of a new field committed to evaluating the effectiveness and impact of engagement practice.
Here, we examine how this growing field has supported considerable scholarship and generated an associated body of peer reviewed and gray literature. The discussion provides useful insights into the implications of formalizing engagement activities. Existing resources provide the basis for starting to draw some early conclusions that can guide researchers’ future efforts to leverage evidence-based engagement methods and improve the rigor or relevance of their work. As engagement practices become increasingly routine (and, as mentioned in a prior post, required or encouraged by some biomedical research funders), engagement scientists have more opportunities to support deep, nuanced inquiries about the effectiveness of tried and tested engagement practices.
As the field expands, and learnings emerge, we have increasing opportunities to benefit from the findings of experiential reports; this growing body of evidence can already begin to support informed synthesis of observed themes, and the articulation of early findings. One valuable article provides a concise summary of early learnings, identified through the review and evaluation of early efforts to conduct partnered research. The article titled “Twelve Lessons Learned for Effective Research Partnerships Between Patients, Caregivers, Clinicians, Academic Researchers, and Other Stakeholders” organizes these early thematic learnings from seminal literature, noting:
“First, research teams with patients, caregivers, and other stakeholder team members tend to involve these stakeholders more at earlier stages in the project than at later stages. Second, people coming into projects without a research background may require orientation in order to participate fully. Third, benefits of partnership may be difficult to formally assess. Fourth, time requirements are a frequent concern for everyone.”
Appropriately, the article acknowledges that the rise in engagement practice suggests that more researchers – including many who are new to engagement methodologies – may try incorporating these approaches into new research activities. As such, the piece (itself, drawing on the collective experience of diverse research stakeholders who collaborated on a project funded by the Patient-Centered Outcomes Research Institute, or PCORI) goes on to articulate twelve practical lessons that can guide others’ future efforts to support collaborative research activities.
While this article offers an accessible summary of key learnings from the field, a broader scan of the literature points to findings in at least three key thematic areas. According to these findings, inclusion of non-traditional stakeholders as research partners can help to increase the rigor, quality, and viability of research activities by:
- Improving the quality and effectiveness of research recruitment and retention strategies – notably, helping to increase the diversity of study samples and encouraging study participation among those in typically under-represented populations.
- Increasing the likelihood of addressing questions, and measuring outcomes, of actual interest to priority populations – whose goals, needs, preferences, and values may not otherwise be understood or accounted for by traditional health research or care teams.
- Enhancing research translation and dissemination efforts – helping to ensure that relevant research findings get communicated back to relevant stakeholder communities (including researchers, employers, care providers, policymakers, and others seeking to engage in evidence-based decision-making).
These themes are highlighted, among others, in the ever-growing body of engagement literature. Notably, much of this literature is captured and catalogued in PCORI’s Engagement in Health Research Literature Explorer – a searchable, sortable, publicly accessible repository of literature that documents and describes meaningful engagement activities (and associated research methods). This resource captures a wide swath of relevant resources, including some of the seminal reviews of engagement literature that have provided a strong foundation for other studies of engagement activities.
Increasingly, engagement science provides researchers with a platform for understanding not only the why but also the how of engagement. For example, one article, published in 2017 and included in the Explorer, describes the results of a participatory process – whereby diverse stakeholders (including patients, advocates, and researchers with differing areas of expertise) collaborated to discuss the outcomes and impact of engagement in research. This group convened to develop a list of Critical Outcomes of Research Engagement (COREs), and to articulate a proposed approach for assessing the impact of patient engagement in research (there, referred to as PER) on research processes and outcomes.
Seemingly, the field will continue to mature and attempts to operationalize relevant concepts and approaches will proliferate. To this end, use of a resource such as the Explorer can prove instrumental in helping people to understand the different pockets of work – all contributing to the broader field of engagement science. In thinking about the existing resources, we can consider categorizing these into three key types of research products:
- Conceptual resources have a normative focus – and primarily describe the concepts, theories, methods, and models that can be used to guide engaged research activities. These models and frameworks often call for the consideration of principles such as justice and trust; account for the influences of power dynamics and collective impact; and rely on an assumed, inherent “good” to motivate stakeholder inclusion. This literature often references the expanding culture shift toward stakeholder-engaged research, and anticipates improvements in community and research outcomes, as a direct result of the engagement process.
- Methodological resources detail different processes by which research teams integrate the activities and perspectives of funders, patient groups, and other stakeholders – into planned research activities. Process guidelines may have either a conceptual (i.e., processes that should be taken) or practical (i.e., experiential accounts and their results) orientation. These resources can help to describe engagement methods, and to guide the selection of appropriately tailored and targeted engagement approaches. Ultimately, these resources may help to increase the standardization and formalization of burgeoning engagement practices.
- Evaluative resources, including empirical studies or data-driven reports, document assessments of conducted engagement efforts. These resources often serve to investigate and evaluate implemented engagement practices, rather than offering insights into theoretical best practices. They aim to increase our capacity to measure and demonstrate the true impact of engagement, by attempting to define and measure outcomes of engagement practice and predictors of engagement success.
Each of these types of sources captures engagement science literature that explores distinctive research inquiries and focus areas. Collectively, they provide a foundation for investigating whether effective and ethical engagement truly results in meaningful improvements to the traditional research paradigm – ultimately increasing the relevancy of health research, and its potential for improving the systems and services that shape people’s lived experiences.
As the available literature base grows, we have become increasingly well equipped to recognize and reflect on the recommended practices of engagement. However, a smaller body of literature exists to describe and overcome the barriers and facilitators that influence research teams’ ability to realize recommended engagement activities. Accordingly, our next post will describe several identified gaps in the existing literature, and challenges to engagement practice, that inhibit the potential for this work to have its greatest possible impact on the fields of HSR. Ultimately, addressing these gaps and challenges could have significant, positive implications for the future of evidence-based health practice and policymaking.
The Engagement Science blog series includes the following six posts. Links will be made available as each post is published: