The research enterprise has made great strides to meaningfully improve lives via evidence-based health policy, practice, and programmatic decision-making. However, the opportunity for realizing this impact is sometimes limited by a relatively constrained research worldview – and by the inflexibilities inherent in traditional approaches to research.

There is growing interest in developing solutions that effectively transform this research enterprise, given the recognized potential for research to spark realizable impact. One such solution involves the development and use of more collaborative approaches to research design, implementation, and translation. As research practices and processes become more inclusive, resultant products are increasingly likely to target the problems and outcomes that have the most direct, relevant, and tangible impact on (and acceptability to) end-users.

In the past several decades, both normative and empirical sources have increasingly suggested and demonstrated the value of replacing traditional paternalistic research approaches with more inclusive, culturally-sensitive methods. As such, the emergence of multiple dynamic streams of evidence-generation reflects growing commitment to cultivating and refining the practice of intentional stakeholder engagement in research. In their article entitled “Stakeholder-Driven Comparative Effectiveness Research: An Update from PCORI,” authors note: “There is a clear and growing international expectation that high quality research be conducted in partnership with patients and communities and not on them solely as research subjects.” This engagement takes different forms, in different contexts; however, it generally involves patients and other non-traditional partners in research activities that require more than their inclusion as invited sample participants. Notably, the recommended types of engagement typically offer stakeholder partners opportunities to participate in the knowledge-sharing or decision-making activities ultimately influencing study planning, conduct, or dissemination.

An emerging field has arisen, in conjunction with this increase in engaged or partnered research. This field of engagement science investigates:

  1. the methods for, and practice of, engagement;
  2. the development of evidence-based approaches or guiding frameworks for engagement; and
  3. the application of these resources, to guide meaningful engagement of non-traditional stakeholders in research.

The rise of engagement science has amplified awareness of the value and impact of engagement efforts, and of the potential for these to enhance both the quality and rigor of research activities. For example, evidence from the field suggests that patient engagement contributes to the quality of health research processes and findings. One study notes: “Patient and public involvement in healthcare research improves relevance and credibility of results, increases enrollment and retention, and accelerates translation into clinical practice.” Recognizing this, some prominent health research funders have begun acknowledging and awarding commitment to meaningful engagement as a core (if not required) part of proposed research activities. In response, efforts to support engagement have become more highly-prioritized among researchers seeking to (1) align their work with industry standards, or (2) enhance their eligibility for funding – which is increasingly dependent on their ability to integrate engagement activities into proposed study activities.

While there is growing consensus regarding the need to avoid purely tokenistic forms of engagement, there are few standardized expectations about what constitutes effective or ethical engagement. The field continues facing barriers to uptake of evidence-based engagement practice, in part, because limited work has been done to support cohesive, standard-setting dialogue. In order to realize widespread engagement – as a more visible and viable practice – communities of practice must work to standardize terminology, practice guidelines, outcomes measures, and quality regulations. This kind of shared and streamlining discourse could produce more substantive and directive guidance, and could minimize “barriers to entry” facing researchers newly incorporating engagement activities into their own work. It could also evoke industry consensus regarding gaps in research, and could inform crucial decision-making about how to target and prioritize future areas of investigation. This would support researchers as they attempt to anticipate and navigate challenges inhibiting their ability to practice and promote effective engagement. Additionally, it would help to guarantee the coherence and coordination needed to support advancement and maturation of the field.

To this end, AcademyHealth’s Engagement Science blog series offers an informed definition of engagement science, and a discussion of some exigent issues and relevant topics influencing work in this field. The series specifically articulates questions, objectives, and methods guiding existing engagement efforts in the field of health research. These posts also comment on relevant funding and policy implications that frame researchers’ ability to access the resources, or sustain the infrastructure, needed to support rigorous health research engagement.

The Engagement Science blog series includes the following six posts. Links will be made available as each post is published:

  1. Introducing Inclusive Research Practices & Potential Impacts
  2. An Overview of the Landscape of Engaged Research
  3. Factors Fueling the Need for Better Defined Engagement
  4. A Look at Existing Evidence
  5. Where to Focus & the Future of the Field
  6. Where Do We Go from Here?
Staff

Rachel Dungan, M.S.S.P.

Director - AcademyHealth

Rachel Dungan works at the intersection of sectors and stakeholder groups – supporting the advancement of heal... Read Bio

Rebekah Angove, Ph.D.

Vice President, Director - Patient Advocate Foundation, REACHnet

Dr. Angove is the Vice President of Patient Experience and Program Evaluation at Patient Advocate Foundation a... Read Bio

Staff

Elizabeth Cope, Ph.D., M.P.H.

Senior Director, Public and Population Health - AcademyHealth

Elizabeth Cope is Senior Director of Public and Population Health at AcademyHealth, bringing experience in the... Read Bio

Holly Peay headshot
Author, Member

Holly Peay, PhD

Senior Researcher - RTI International

Dr. Peay is a social scientist, genetic counselor, and bioethicist at RTI International. Read Bio

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