Previous posts in this series have described the body of available literature, and the landscape described by early engagement science findings. The authors have also acknowledged that, as engagement in research becomes more routinized and standardized, the field of engagement science continues to expand – as does people’s awareness of the challenges associated with real-world engagement practice.

While research funders increasingly mandate engagement activities as components of proposed work, such requirements rarely require that applicants detail their plans. Researchers may not fully acknowledge, examine, or address the long-term assumptions or biases that could interfere with their successful implementation of adopted best practices. Also, many challenges emergent in a truly engaged (and dynamic) research process cannot be adequately anticipated prior to initiating the work. As such, funder requirements alone do not necessarily encourage or facilitate the kinds of systemic cultural, attitudinal, or structural change needed – to ensure respectful or recurring engagement practice.

Research funding has already been dedicated to support the creation, refinement, and dissemination of evidence-based engagement practices. However, ensuring successful implementation of these practices will also necessitate investment in researching the features of environments and communities most conducive to successful engagement.

Based on our literature scan and experienced knowledge of the landscape, we have identified three areas of work and study – that can help to lay a vital foundation for ensuring that engagement practice matures successfully and sustainably.

Cultural and Attitudinal Change

While pockets of innovation have developed via the efforts of early adopters, many researchers do not have the experience, training, or institutional backing necessary to support robust engagement or evaluation activities. Researchers can be constrained by common practices recognized, accepted, and rewarded by their institutions - which may rely on traditional approaches to research. For example, the extra effort required for engaged research is often not considered when reviewing someone’s candidacy for tenure. If anything, such intentional engagement practices can slow down research. This may make a researcher seem less productive by traditional metrics, which could hinder his or her advancement.

A notable body of research already documents ways that stakeholders’ beliefs and attitudes shape engagement practice, engagement scientists also investigate the influence of researchers’ own attitudes and behaviors on the uptake or effectiveness of engagement practices. According to resources provided by the American Association for the Advancement of Science (AAAS), “…despite the benefits of public engagement, scientists report barriers to engaging public audiences, notably time and a concern that it will shift attention from their research.” That said, surveys indicate that “…many scientists value public engagementbut are not aware that their colleagues feel the same way.”

Separately, a 2015 report from the National Health Council indicates that, “All stakeholders, including patient groups, pharmaceutical companies, regulatory agencies, and research organizations must embrace a culture that values patient engagement.” That same report acknowledges lingering “skepticism of the benefits of patient engagement,” which results in a lack of patient perspectives reflected in activities such as the FDA review process. This helps to demonstrate that work done to successfully implement engagement practice can be potentially thwarted, by cultural or systemic failures to truly embrace engagement approaches and associated mindsets. That said, research products can help to illuminate and address specific barriers – thereby informing efforts to increase and improve the practice of engagement, throughout the broader health research field.

Ultimately, this work would inform implementation of policies and practices that help (1) cultivate environments prepared for meaningful and ethical engagement, in order to (2) support the adoption of best practices. Successful and systemic change would require action at multiple levels. On an individual level, via exposure to the literature, researchers could develop a stronger commitment to embrace or promote engagement practice – strengthening the value and visibility of the engagement practitioner “identity” and cohort. At the organizational or system level, communities of practice could better align their incentives to promote behavior change and “nudge” other system factors toward creating environments conducive for engagement. This might involve formal shifts in funding and publication requirements; it could also take the form of funders or institutions adjusting timelines or expectations – to make space for conscientious engagement practice. Ultimately, a multi-level and mutually reinforcing solution will be needed, to promote germination of a true culture of engagement.

Standardization and Regulation

The National Health Council report specifically comments on the need for standardization, given that lack of such standardization interferes with opportunities for innovation in the field. The report notes that, “Industry stakeholders have concerns that some research-based interactions with patients could be misinterpreted as promotional activities or a violation of other regulations. Without clear guard rails that outline what is considered appropriate and what is considered a violation, industry will not risk implementing or utilizing innovative engagement strategies.”

The reality that different stakeholders may have divergent (or even opposing) beliefs about research aims, objectives, or processes can complicate discussions. Unless some form of collective understanding and associated regulatory structure is in place, it becomes difficult to ensure the appropriate practice of engagement – as experienced by both researchers and non-traditional research partners alike. Ultimately, the reality of this uncertainty and the associated risk may dissuade researchers from building engagement activities into their project plans.

Traditional research models account for the protection of human subjects. However, the suggested redefinition and expansion of stakeholders’ roles (now, as non-traditional research partners) raises consideration of other relevant issues. This new collaborative relationship warrants the development of models that also account for issues related to power sharing, reciprocity, mutual respect, and assessment of the benefit/harm ratio as perceived by diverse research partners. The inclusion of non-traditional stakeholders as research partners also raises considerations about ways to appropriately and ethically incentivize and acknowledge engagement. Some efforts have been made to articulate the relative value propositions that might help to mobilize diverse stakeholder partners, but these incentives must be supported by the promise of trusting and respectful relationships – in order to support both productive and sustained partnerships. Accordingly, more targeted work in this space could expose a range of challenges – paving the way for identification or establishment of appropriate mechanisms for safeguarding future engagement efforts.

Quality of Evidence-Based Engagement

As is referenced throughout this blog series, it is challenging to ensure the quality and consistency of engaged research, given that (1) practices are emerging through diffuse, independent streams of experimentation, and (2) literature is limited with respect to specific operational methods as well as empirical evidence for the effectiveness and impact of discrete activities. This creates conditions of uncertainty for practitioners who are often left wondering whether they are “doing it right” – or how they will know if they have been successful. It also challenges external groups, such as funders, to identify mechanisms of quality assurance. Moving forward, standard-setting will help to refine the recommended methodologies and improve the quality of research outputs that claim “engagement” among their core components. Central to this will be the development of standard terminology as well as metrics that evaluate the structures, processes, and outcomes of engagement. These will serve as valuable tools for benchmarking readiness to engage, and for supporting continuous improvement of effective practices. Such metrics could also be incorporated into research plans solicited by funders, to ensure that quality is a component of engagement plan evaluation. Further, these could be documented in publications reporting on the results of engaged research. Advancements in the standardization of assessment and assurance of quality are likely to not only support the rigor of the field but also to promote greater cultural acceptance of engagement practice as a valuable feature of research.

As would be true with any emerging or maturing discipline, there are other acknowledged limiting factors that warrant attention and further academic study. That said, identification and prioritization of the gaps noted above may help to direct researchers’ attention and resources. Ultimately, this could support them in prioritizing research activities or channeling their investments in strategic and impactful ways.

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.

Senior Manager - AcademyHealth

As Senior Manager, Rachel develops and applies strategies for translating and disseminating public health syst... 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

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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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