Preceding posts in this series have provided a brief landscape of the field of engagement science - highlighting its history, accomplishments, and current gaps. In the last decade, a vibrant movement has emerged to encourage that clinical research become (1) more grounded in practical care delivery challenges, and (2) better designed to address real-world challenges and needs, which requires input from diverse stakeholders. Propelled by this energy, a new community of researchers is forming – sparked by their dedication to ensuring that complex, multi-stakeholder teams can be created, sustained, and productive. We have reflected on the fact that there is much to celebrate, as demonstrated by early engagement science findings; however, opportunities for improvement remain – as we usher engagement science into its next phase as a viable and valued field. In this final post, we consider a series of recommendations to help support maturation of the field via efforts to improve cohesion, standardization, strategy, and productivity.

Recommendation 1: Establish a more unified community of practice.

Clinical research can become siloed such that researchers and other stakeholders in one clinical area may lack awareness of relevant methods and approaches being applied in other contexts. This challenge extends to the practice of engagement. Recent developments such as creation of the UK journal Research Involvement and Engagement, and the emergence of engagement-related special interest groups within several professional societies (e.g., the Professional Society for Health Economics and Outcomes Research, or ISPOR; the International Society for Quality of Life Research, or ISOQOL), serve as promising signals that engagement scientists and practitioners of engagement in broader biomedical research are beginning to seek out meaningful connection and collaboration. More can be done, though, to encourage cohesion and foster innovation among practitioners of engagement science; this would lead not only to the development new practical tools, but also to the growth of a robust evidence-base – supported by the structural foundations needed to sustain the field. Specifically, engagement scientists should work to develop shared language, definitions, and taxonomies. Additionally, a networked learning community should be established to connect and convene thought leaders – encouraging ongoing dialogue and collaboration.

Recommendation 2: Develop standardized metrics of engagement quality and effectiveness.

Several measurement issues require attention in order to enhance both quantitative and qualitative methods for evaluating engagement approaches. Conceptual models outlining the relationships between antecedents (readiness), processes, and outcomes of engagement would help to guide development of metrics – and to ensure these are logically related to the outcomes of interest. Indicators of readiness should be developed to inform research teams of the steps needed to prepare for successful complex collaborations. Indeed, groups are already making progress in this arena, as evidenced by the success of PCORI’s engagement rubric, and its pipeline to proposal process. Finally, greater consensus is needed to articulate and define specific outcomes of interest related to engagement. Separately, there is a need to determine how best to translate measured outcomes into clear indicators that are demonstrably sensitive to the quality of engagement practice. Work in this area will promote quality improvement within the field, and it will facilitate evaluation research – including studies examining the comparative effectiveness of different engagement techniques. Given the diversity of settings in which engagement is applied, variation in methods and tailoring to specific contexts or projects should be expected. However, as individual approaches continue to proliferate, a standard set of core metrics will be necessary – against which research teams can assess relative effectiveness, identify best-fit methods for specific projects, and ensure quality during and after implementation.

Recommendation 3: Formulate a coherent national research agenda.

Engagement strategies hold considerable promise for improving the quality and impact of certain clinical research activities. To realize this promise, the nation's scientific community must mobilize to address core uncertainties regarding if, how, and when to best apply and assess these strategies for implementing and evaluating engagement. The growing interest in engaged research, and the increased financial and policy incentives accelerating the practice, exposes the need to coalesce around standard priorities in this research arena. Holding a convening of engagement science stakeholders, for example, might help to facilitate:

  • Development of consensus definitions for engagement and engagement science;
  • Articulation of key priorities, in terms of opportunities for using engagement to improve research;
  • Identification of major gaps in the field, and coproduction of a research agenda (to guide work in the next 5-10 years);
  • Establishment of recommendations, on ways researchers and other key stakeholders can support work aligned with the broad-based agenda.

The national effort to improve engagement practices will be guided by a growing body of strong research, which tests and clarifies the relationships between engagement activities and research outcomes. This will, in turn, contribute to improvements in the quality of clinical care and the improvement of observed health outcomes.

Recommendation 4: Identify opportunities and address barriers to the practice of engagement in research.

Despite rapid proliferation of tools to support engagement, and funding requirements to incentivize its adoption, uptake among researchers remains inconsistent; the relative success of specific approaches remains varied or unmeasured. Furthermore, data on practitioner knowledge, attitudes, experiences, and behaviors are also limited. These gaps suggest that patient-centered research practices are currently enacted without the foundation necessary to ensure their success. Addressing these gaps calls for (1) systematic investigation of multi-level barriers and facilitators to identify mechanisms for action, and (2) development of a clear framework to guide individuals and institutions in their continued transformation of the clinical research enterprise. In tandem with the convening described above, a multi-stakeholder effort – to identify barriers and opportunities in the field, and collectively chart a course forward – should be pursued.

Engagement science is not an autonomous field of work or study. Instead, it can be thought of as a vibrant arena that integrates scholarship and practice across a range of disciplines. Its scope of core questions, criteria for quality control, and membership of actively engaged investigators continue to flux and flex – as the field undergoes the inevitable growth and redefinition, associated with an emerging discipline. As is true for any maturing field – it has become necessary for us to collectively determine a set of standards for operating, and to develop strategies for moving forward. Engagement science is at a pivotal point, where growth is dependent on meeting the recommendations outlined above. We must work together to shape this field – ensuring that it can deliver on the promise of a truly transformed clinical research enterprise. Ultimately, this will also offer the promise of a research enterprise that exists in closer proximity with the real world – enhancing the likelihood that evidence will tangibly inform health care and improve health outcomes.

The Engagement Science blog series includes the following six posts:

  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

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

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

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

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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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