Opportunities and challenges in conducting community-engaged dissemination/implementation research

Dissemination and implementation (D&I) research has emerged in recent years in response to the recognition that the pathway from research to practice is complex, lengthy, and rarely completed [1, 2]. As studies have suggested that only a fraction of scientific findings have an impact on health and health care [3], D&I research centers on the processes to get those findings, often evidence-based interventions, integrated within the variety of clinical and community systems where health care is delivered. Evidence-based interventions can range in focus from diagnostics, prevention, treatment, and maintenance of health, and can target individuals or populations.

D&I research frequently assumes that an evidence base for interventions has already been established. Too often, many innovations gain evidence through efficacy trials that establish the intervention produces its intended outcome, yet are not disseminated or implemented further. While this has been somewhat remediated by an increase in effectiveness research, testing innovations within real-world settings and populations, there is still a need to determine how evidence and evidence-based interventions make their way toward standard care.

Funding agencies have defined the area of D&I research as an attempt to build the knowledge to lessen the gap between research and practice, often with some minor variations in the use of terms. At the NIH, for example, dissemination and implementation research carry distinct definitions within the funding announcements that solicit work in this area. Dissemination research is “the scientific study of targeted distribution of information and intervention materials to a specific public health or clinical practice audience. The intent is to understand how best to spread and sustain knowledge and the associated evidence-based interventions [4].”

In contrast, implementation research is “the scientific study of the use of strategies to adopt and integrate evidence-based health interventions into clinical and community settings in order to improve patient outcomes and benefit population health.” The NIH made these distinctions in order to recognize that scientific knowledge is still needed both to best create, package, transit, and receive evidence (dissemination) and to adopt, integrate, and sustain evidence-based interventions in the many places where health and health care are impacted (implementation) [4].

From our experience in advancing D&I research, we have recognized the importance of not only enhancing the supply of evidence-based interventions, but also of the need to understand their demand. D&I research, by its very nature, is a team sport, requiring the engagement of a range of stakeholders, from patients and families to clinicians and administrators, and even policymakers. Too often, even in D&I research, we have not emphasized the need for engagement and partnerships of the communities so vital to optimizing the value of our evidence [5, 6].

This is the rationale for the current special section in “Community-Engaged Dissemination or Implementation (CEDI) Research,” which focuses on research involving dissemination or implementation of evidence-based health interventions within clinical or community-based settings using community-engaged processes or partnerships, including but not limited to community-based participatory research. This section aims to highlight the role of community partnerships in the conduct of the research and/or the development and execution of dissemination or implementation strategies that are used to integrate research evidence and evidence-based practice within communities and service systems. The section highlights work being done in community-based settings, in particular with recognition that reaching people in community settings with evidence-based interventions has the potential to expand the impact of the translational continuum, and reduce or eliminate persistent health disparities in nearly all areas of population health and chronic disease. We consider the definition of “community” in the special section to include both research outside of healthcare settings (e.g., schools, workplaces, faith-based organizations) as well as research in clinical settings (e.g., practice-based research networks, integrated health systems) that involves partnerships linking research, practice, and policy. Communities in clinical settings can consist of patients, families, clinicians, administrators, and researchers.

We have seen a veritable explosion in the quality and quantity of D&I research in the past decade. Many conceptual frameworks have helped to guide the field around essential barriers and facilitators to integrating evidence into practice [7]. Increases in participation in D&I annual scientific meetings [8], training programs [9], and portfolios of funded D&I research [10] all portray a field on the move. The recent NIH PARs have encouraged more work on the mechanisms underlying effective D&I strategies, along with greater focus on sustainment, local adaptation and even de-implementation of sub-optimal interventions. Importantly, the need for more robust partnerships in D&I research remains a top priority for the field [4]. Each of the papers highlighted in this special section broadly addresses the challenge of how to get evidence-based interventions to reach more people in the context of community engagement that lies at the center of their work. We will now discuss briefly the articles’ contribution to theory and methodology in CEDI research.

Use of theory in CEDI research

The field of D&I research has recently seen a proliferation of theories and models. While this is a positive development for the field, less work has been conducted to date in actually applying and testing these theories/models. Tabak and colleagues, for example, reviewed 61 D&I models, categorizing them according to what level of change they targeted, whether they focused on dissemination and/or implementation, and how explicitly they defined constructs [7]. Across virtually every model included in the review, the need for more direct model testing was noted. While some theories have been more frequently used in recent years (e.g., Diffusion of Innovations, Consolidated Framework for Implementation Research [CFIR], RE-AIM), theory testing remains a limited part of our research portfolio.

The importance of a conceptual framework for researcher readiness for participating in CEDI, based on a set of core competencies, is presented in the article by Shea [11] and colleagues. This article highlights a set of 40 competencies among nine domains including but not limited to perceived value of community engagement in D&I research, knowledge of community characteristics, and collaborative planning of the research. This framework is a useful application of community engagement to D&I research. Yet the competencies and domains are not all specific to D&I research, and could be applied to research earlier in the translational continuum (e.g., efficacy trials). An exception is partnership sustainability, reflecting the recent emphasis on sustainability in D&I research. This piece leads off the special section because its theoretical nature provides a nice foundation on the role of community engagement in D&I research.

A number of models highlight the importance of the outer level of the socio-ecological framework—policy. As policy can either facilitate the use of evidence-based practices (e.g., improving access and coverage for specific interventions; supporting improvements in healthcare infrastructure) or create barriers, the need to engage policymakers in understanding D&I processes is clear. This is nicely emphasized by the article by Leeman [12] and colleagues, which concentrates on the impact of tobacco point of sale policies and uses community partnership models to support policy change.

The articles presented in this special section also illustrate a number of challenges in applying theory in CEDI. For example, D&I theories/models are often not developed with community engagement and research in community-based settings in mind and therefore may not always fit well. The challenge lies in identifying an optimal use of theory at the nexus of community-engaged and D&I research. However, with such a challenge lies opportunity, as illustrated in the article by Shelton [13] and colleagues. The authors focus on the example of efforts to sustain lay health advisor programs to improve cancer screening among African American women, noting the limitations of existing theories and the need to create a new sustainability framework that better reflects the ongoing use of the program within community settings.

Methods in CEDI research

In recent years, the field of D&I research has emphasized the role of intervention adaptation. A recent paper called for the development of a central repository of data on multiple types of adaptations and their impact on intervention outcomes (“the adaptome”) as a way to maximize ongoing learning of the effectiveness of interventions as they are implemented within diverse settings and for heterogeneous populations [14]. As much of the evidence for adaptations currently comes from trials of specific adapted interventions, yet the majority of the activity for adaptations occurs in the context of implementation, more work is needed here. The role of adaptation is highlighted in the article by Martindale-Adams [15] and colleagues, which discusses the challenges and opportunities involving the implementation or spread of an evidence-based dementia caregiving intervention to American Indian and Alaskan Native communities. The article describes cultural, community, health system, and tribe-specific adaptations across six implementation stages, guided by the Fixsen and Blasé implementation process model (e.g., exploration/adoption…sustainability) [16, 17]. The article illustrates implementation challenges in these communities reflecting the rural setting, cultural views of dementia and caregiving, and health services. We urge the reader to review the article to learn about the creative solutions the team applied to these challenges. One challenge in particular was the lack of available data, as compared to an efficacy trial. The tradeoff was that the study was conducted in more of a real-world setting, illustrating the tension between internal and external validity.

Northridge [18] and colleagues also discuss the important idea of adaptation, applying evidence-based oral health programs to a Sikh American community. The authors describe the use of a community advisory board throughout the project, from informing questions around oral health to be asked of the community, to finding the optimal approach to adapt evidence to the needs and beliefs of the local community. In the article by Kwon [19] and colleagues, examples of cultural adaptations included language translation, outreach materials that were targeted toward traditional Asian American dietary practices, and health education materials that incorporated supporting biblical scripture.

The importance of partnerships in D&I research was a focus of this special section, and is highlighted by several articles, including one by Boothroyd [20] and colleagues. This article discusses the function of partnerships as a continuum, from use of community partnering as the intervention strategy, to involving community partners in co-creating various aspects of an intervention. Multi-level stakeholder engagement is discussed in the Veterans Administration setting in the article by Hamilton [21] and colleagues. This article describes the process of stakeholder engagement in early implementation of evidence-based quality improvement where health care is targeted to the unique needs of women veterans. The community engagement processes, such as stakeholder involvement and readiness, has been echoed in principles of community-engaged research. The element that makes this article reflective of D&I research (specifically implementation) is the focus on evidence-based quality improvement with the Veterans Administration setting. Partnerships are also highlighted in the article by Allicock [22] and colleagues, which discusses the use of community coaches and guides to help navigate African American cancer survivors and caregivers in rural areas. The authors note the promise of train-the-trainer models to improve effective community engagement in the delivery of services to rural cancer survivors.

Measurement is another methodological area in CEDI that was discussed in some of the special section articles. The importance of community capacity was illustrated in the article by Lee [23] and colleagues. This article describes an extensive community engagement process that went into developing an instrument to assess readiness and capacity to implement farmers’ market interventions among practitioners working in low-income settings. While this instrument shows strength as a practical tool for use in farmers’ market interventions, as with many D&I measures, a challenge to broader utility lies in its context specificity. Capacity of faith-based organizations to implement cancer screening was discussed in the article by Leyva [24] and colleagues, who present results from a qualitative study that explored the ability of Catholic parishes to integrate evidence-based cancer control interventions to meet the needs of the community. The article presents the need to utilize existing resources and build skills among parishioners toward better implementation.

Other articles in the special section have measurement implications, such as the work of Shea [11] and colleagues who outline instrument development as a next step from their CEDI framework. Measurement at the environmental/organizational level is discussed in the article by Kwon [19] and colleagues. The authors describe assessment of Asian American faith-based organizations, the setting of the intervention. This assessment involved use of a checklist including availability of a variety of foods on site and health promotion activities conducted, as well as onsite observation of nutritional policies in each organization. The study conducted evaluation at both the organizational and individual levels.

Finally, an article by Ramanadan [25] and colleagues focuses on the use of social network analysis as a mechanism for understanding and influencing the implementation of evidence-based programs to address health disparities. The article emphasizes the value of using practitioner networks to build community engagement around evidence-based practice implementation, and the benefit of mapping network connections to improve contextual understanding of implementation, something less frequently used in implementation research in community settings.

Conclusion and implications

The articles included in this special section illustrate some of the most promising research that brings together the areas of community engagement and D&I research. Certainly, there are challenges in this area, including those involving translating methodologies, interventions, measures, and findings across a wide variety of settings and populations. Perhaps most notable is the challenge of research in this area to truly bring together both community engagement and D&I research. Many studies excel in one of these areas but the other is less well represented. One could imagine a Venn diagram with overlapping circles of community engagement and D&I research. The aim of this special section was to highlight research at the nexus, or the shared area of CEDI, which we recognize is not as large as it could be. As the science continues to mature, we expect to see more development and outstanding examples of CEDI research.

Another challenge we found in reviewing the papers, which may not be unique to CEDI, is in effectively using multi-level designs. Multi-level work, such as that which considers both the organizational/setting and the individual level within the same investigation, presents additional complexity (e.g., statistical, data interpretation), yet offers an opportunity for a more rich understanding of D&I processes. Use of multi-level models to guide this work could include the RE-AIM framework [26, 27], PRISM [27] (practical, robust implementation, and sustainability model) or CFIR [28]. A clear opportunity relevant to CEDI research is use of data harmonization, where researchers employ standardized instruments (common data elements) across studies to allow for comparisons. We note that the aforementioned challenges involving limitations of setting- or intervention-specific measures will present complexities.

Given the importance of context to D&I research and its centrality in supporting community engagement, we believe there is great potential for CEDI research to reach the population level with many types of evidence-based interventions. The articles in this special section offer promise that a twin focus on community engagement and D&I research can better reflect the complexity of integrating evidence-based practices in community settings and support development of more effective D&I strategies to change practice and improve population health.