This analysis illuminated gaps in the application of engagement in D&I research and opportunities to study engagement processes and outcomes in the context of D&I research (Fig. 4). [INSERT FIGURE 4 HERE]
For our primary research question of to what extent and how are community members and partners engaged in recent NIH-funded D&I research, it was not surprising to see that nearly nine in ten grants reviewed involved engagement in some way, given the increased attention to engaged research in recent years. However, engagement scientists might argue that the more than half of studies involving partners at the level of consultation are not truly meeting the spirit of engagement when partners are simply serving as research participants, key informants, or advisory board members. Level of engagement did not appear to vary by type of partner, though that was difficult to examine since multiple partners were often engaged in each grant. Full partnership may not be warranted or necessary in every research study, but the rigor and relevance of D&I research would likely benefit if investigators were engaging communities and partners at the higher levels of collaboration and partnership more often. This opportunity goes beyond engagement just in formative research and implementation strategy design. To fully appreciate the potential benefits of such engagement, opportunities across the research continuum will likely be necessary. For example, community and partner engagement in theory development could result in theories, models, and frameworks that are more relevant and applicable to the populations of interest. Likewise, engagement in intervention design and evaluation may lead to more effective and sustainable interventions.
It was encouraging to see that multiple diverse groups of partners, on average, were engaged in each study. For intervention implementers, opportunities remain to increase engagement of policymakers, social service workers, public health professionals, and implementation support practitioners (e.g., knowledge brokers, technical assistance providers, practice facilitators). Further, engagement with product makers, purchasers or payers, and health equity experts, could be considered to potentially increase outcomes related to “designing for dissemination” including acceptability, cost-effectiveness, scalability, and sustainability (39, 40).
Whereas an engagement approach was not specified in one in three grants that had engagement activities, it was encouraging to see that nearly one quarter of these grants were employing a practice-based research approach, and more than a quarter were conducting CBPR or following generic community-engaged research approach. Grant applications that did not identify a specific approach were most commonly operating at the consultation level, reinforcing critiques that they are likely not meeting the true spirit of engagement. Opportunities remain for incorporating strategies that involve deeper engagement approaches with both end-user implementers and beneficiaries of innovations such as human or user centered design (41), process mapping (42), systems mapping (43), intervention mapping (44), or implementation mapping (45), and other longitudinal and hands-on strategies. Future research can explore the impact of these increasing levels of engagement and various strategies on relevant implementation outcomes.
Indicators of equitable engagement were challenging to extract and infer from the proposals, despite having access to the full narrative and related budget documents. Where indicators were apparent, partners’ influence on the research and mutual benefit of engagement were most commonly evident. Little to no description of issues of ownership, responsibilities, or power and control over the data, findings, or otherwise was found. It is possible that issues of equitable engagement emerged and were addressed over the course of the project but were not included in the proposal for several reasons: not part of grant evaluation criteria; lack of space; not yet defined with partners, thought to be irrelevant to the science. Regardless, the issues around the influence of power, responsibility, ownership, and control in engaged research and as they relate to dismantling structural drivers of social determinants of health (SDOH) are ripe for future research. Exploring power dynamics in engaged research and proactively co-creating acceptable engagement structures could enhance community participatory research (46). In 2021, Shelton, Adsul, and Oh (47) outlined recommendations to the D&I research field for addressing structural racism that included leveraging engagement as an essential method, assessing and addressing power differentials, and applying multi-level approaches for implementing interventions, policies, and strategies to address structural discrimination and advance health equity. In 2022, Stanton et al. (48) proposed a typology of 3 types of power that appear in implementation efforts and outlined a number of research avenues to investigate how power operates and influences implementation and health equity-related outcomes. Consistent with these recommendations, the findings of this analysis suggest that opportunities remain to explicitly address equitable engagement in D&I research.
D&I research offers promise for more systematically applying engagement and in so doing, providing a lens for advancing the science of engagement. Distinct from participatory research that uses engagement techniques, engagement science examines the methods and outcomes of engagement in order to develop an evidence base for why engagement matters and how to do it well (49–51). Certainly, studying engagement and relating it to D&I strategies or outcomes is not possible without measuring engagement in some way. Given that most grants reviewed did not formally assess engagement, there remains a significant opportunity for D&I scientists to fully embrace engagement approaches and rigorously measure these processes to ideally make an impact on the sciences of D&I and of engagement moving forward.
The second research question strived to uncover any trends in engagement variables based on key study characteristics. There were noted missed opportunities for engaging key community members and partners in a portion of studies focused solely on implementation. Furthermore, there was a notable lack of engagement described in studies that involved delivery of an intervention; future studies could likely benefit from more active attempts to engage the implementers, decision makers, and intervention beneficiaries more substantially and to examine the impact that may have on study design, execution, and outcomes. Although there were fewer grants in total that were both D&I (n = 23), they all involved engagement of some sort, possibly due to the increased challenge of studying and successfully accomplishing both dissemination and implementation within a single time-limited grant. Similarly, grants involving testing strategies, scaling up, or studying sustainability were more likely to involve community or partner engagement, possibly due to the active and complex nature of these phases of implementation. Many implementation efforts require engagement with a decision maker to facilitate the test of change, and studying scale up and sustainability are intuitively enhanced with the involvement of partners responsible for expanding and maintaining program implementation. Similarly, case study and observational study designs appeared to be more common in engaged grants, likely because they required access through partners to collect data. In contrast, grants without engagement were more likely to utilize modeling approaches, which may not obviously require input from partners. Yet, partner engagement in modeling approaches to interventions remains a relatively unexplored area of inquiry that has the potential to make such efforts more responsive and relevant to communities they aim to serve (52). Indeed, some initial efforts to develop a “participatory systems dynamics modeling” approach has shown promise. Logically, the implementation strategies employed in engaged grants tended to be strategies that stemmed from that engagement (e.g., engaging consumers, developing interrelationships, training). Similarly, community-situated studies all involved engagement and there was greater indication of decision making and power and control in studies at higher levels of engagement.
It was encouraging to find that nearly half of grants overall were relevant to disparities in some way and half of the engaged D&I grants were disparities-relevant. Given the potential of D&I research and engagement approaches to address SDOH and advance health equity among underserved populations who experience disparities (22, 53, 54), opportunities remain for growing the amount of disparities-related and equity-focused engaged D&I studies. In particular, there was limited engaged research with some populations experiencing health disparities such as underserved rural, sexual and gender minorities, and others (e.g., disability communities). With respect to engagement themes among disparities-focused grants, nearly all these grants involved engagement at some level, and they engaged partners more deeply at the levels of collaboration or partnership as compared to non-disparities focused grants. This may be in part due to the longitudinal commitment necessitated by equity focused work as well as the noted increasing federal support for engaged research approaches to advance health equity. The disparities-focused grants were more likely to be conducted in a community setting or at a community-based organization and were more likely to involve multi-level interventions as compared to non-disparities grants. These findings perhaps indicate that D&I researchers are beginning to answer the calls to truly partner with communities and devise multi-pronged strategies that address complex problems, build capacity among D&I researchers, and incorporate equity across implementation focus areas (47, 55).
Strengths And Limitations
This portfolio analysis had several strengths, including the use of dual coders and a structured codebook. In addition, as an internal NIH project, coders had access to the full grant proposal narrative including the research summary and budget documents to be able to code more accurately.
Yet, important limitations were present as well. The inclusion criteria were limited to a specific set of program announcements and a single study section; this likely omitted some D&I research funded across NIH through other mechanisms and study sections. However, the included grants do incorporate the majority of D&I research supported by the NIH. Coders reviewed grant proposals, which may or may not be a true reflection of study activities implemented once funded. Some engagement variables coded, such as approach and equity indicators, are elements that are not required to be specified or described in proposals, potentially leading to an overcount of “not specified/described.” Finally, despite training coders, developing a thorough codebook with definitions, and providing support throughout the project, coding is subject to human judgement and manual data entry errors, though this was mitigated by dual coding to agreement.