Ongoing Community-academic Partnership Activities on DEI

The C-RAC was created in 2009 to provide a space where co-learning can take place between researchers and the community being served. Over its 14 years of existence, the C-RAC has evolved into a model fostering DEI in an insular, academic research setting. With bylaws on governance structure and subcommittees run by community partners, a working model was established to help shift the power dynamic between the research institute and the community with community partners seen as trusted experts based on lived experiences and environments in which they reside. Specific activities of the C-RAC include: (1) ensuring cultural diversity in race/ethnic, age, gender, sexual orientation, and occupational backgrounds in the C-RAC membership composition, (2) facilitating equitable access to healthcare research to address health disparities and social justice, (3) improving community awareness, trust, knowledge, understanding, and inclusion in all phases of the research continuum in relevant community-engaged research, and (4) documenting the engagement steps and processes to evaluate researcher commitment to a fully engaged community within the entire research process. These steps are routinely monitored by the community partners of the C-RAC with a unified approach and goal toward improving health outcomes and reducing health disparities.

Conceptualizing and Operationalizing Trust

Since its inception, the C-RAC has adhered to seven operationalized [Reference Gilfoyle, MacFarlane and Salsberg26,Reference Gilfoyle, Salsberg, McCarthy, MacFarlane and MacCarron27] domains of trust as integral to DEI. These multi-dimensional domains included (1) acknowledging and working to address vulnerability among the community partners to fully understand research, (2) encouraging academic partners to fully explain the nuances and critical phases of the research continuum, (3) enhancing the belief that community partners will act and follow a set of guided principles of research, (4) sharing on values, visions, and goals toward trust-promoting plans and activities, (5) facilitating a set of collaborative tasks based on perceived skill set, expertise, and experience of each partner, (6) ensuring reliability and reciprocity of timely research tasks performed by both partners; and (7) power sharing and co-ownership of partnership activities. Steps and processes are currently in progress toward developing structured surveys on trust dimensions with the aims of psychometric testing, analysis and dissemination of findings in relation to community-engaged research.

The conceptual framework (Fig. 1) illustrates a unifying model for a successful community-academic partnership in research. A key feature in this framework is a sincere recognition by the academic partners of the mistrust and the negative perception about health services research and delivery that exist in the community. The unifying model promotes bidirectional engagement to build sustainable trust and ensure DEI for critical community issues. Using DEI strategies, the C-RAC translates community inputs to assist academic researchers throughout the research continuum and vice versa. These iterative processes facilitate both community and academic partners to listen, understand, and reciprocate concerns of both sides toward building a successful community-engaged research. Consequently, these iterative interactions and engagements generate a sustainable trustworthy community-academic partnership among researchers who solicit community inputs to succeed in their research endeavors (Fig 1).

Figure 1.

Unifying framework toward a sustainable community-academic partnership in research. C-RAC, Community Research Advisory Council.

The C-RAC’s activities adhere to structural and logical steps within the unifying DEI model. As an instructive road map to illustrate the resources or inputs required to achieve the DEI goals, the logic model in Fig. 2 depicts the step-by-step relationship among resources, planned work, and intended DEI results. The logic model also guides processes to evaluate desired goals and objectives. The logic model describes how inputs and activities based on DEI-relevant queries and objectives will lead to intended DEI outcomes.

Figure 2.

Logic model for DEI practices in the community-academic partnership. CAP, community-academic partnership; C-RAC, community- research advisory council; TL1, predoctoral training program.

The inputs, activities, and outputs circumscribe a unifying approach to DEI within the C-RAC and follow outcomes that address a specific inquiry or objective. For example, to evaluate that the C-RAC has a culturally and racially diverse membership, its composition is periodically recalibrated. Furthermore, to ensure equity in community voices in the research process, community leaders are invited to participate in ad hoc forums to identify and prioritize unmet health needs, thus paving the way toward future research endeavors. Similarly, the extent to which researchers reciprocate community feedback and document revisions in their research protocol has been a yardstick to demonstrate the inclusion of community voices toward achieving DEI goals in the CAP.

Outcomes of DEI Efforts

The C-RAC strives to function as a DEI team within the community-academic partnership. Each DEI activity has shown promise that community voices can be heard toward alleviating the mistrust in the research continuum.

Diversity

Per bylaws, C-RAC membership constitutes more than half of nonacademic, community partners. Cultural and geographic diversity (five counties) of the thirty-two members reflect five age groups (30–83 years), six race/ethnic groups (twenty-one Blacks/African Americans, five Whites, two Latinas, three Asians, one African), two-third females, three LGBTQ individuals, employed, retirees, and semi-retirees, community health navigators, activists, federal, state, and local administrators, academic support staff and faculty. Additionally, the C-RAC membership represents diverse stakeholder groups, e.g. community leaders, research participants, patients, lawyers, faith-based and business community, students, staff, and faculty. Overall, membership included seventeen community partners and fifteen faculty and staff from Johns Hopkins, herein termed as academic partners. On an average, each member attended sixteen out of the twenty-two scheduled meetings in a calendar year, served as member for at least 2 years, and actively participated in at least one subcommittee. Almost three-fourth (23 of 32) of C-RAC members have been actively participating in activities for 8–10 years.

Equity

The C-RAC is engaged in three major efforts throughout the year: (1) research reviews as consultative services from community partners who provide guidance/advice to research teams throughout the grant writing and post-award research processes, (2) community outreach through two annual programs to provide cutting-edge information on prevention, treatment, research, and ethics of community prioritized clinical topics, and (3) availability of clinicians and researchers at local markets to discuss medical and research topics of interest to community members. To this end, the inputs of both the community and academic partners are equitably distributed in order to achieve measurable success of the aforementioned efforts. Overall, the academic partners have been very supportive of C-RAC with a goal to ensure that benefits of the collaborative knowledge-sharing activities flow equitably between community and academic partners.

Another example of equity in power sharing in the CAP is the composition of three (research and training; governance; community outreach) committees, each with a chair (elected by the C-RAC members) from community partners. A major task of each committee is to ensure DEI in C-RAC matters. Currently, ten community partners and three academic partners constitute the governance committee.

In matters of equity in CAP, community partners needed more direct, clear, and articulated communication with the academic partners. Community partners frequently indicated that they needed to clearly and comprehensively understand what researchers discussed on a particular topic. Thereupon, the “Teach Back” was a critical process on the part of both the community and academic partners that ensured discussion issues remained understandable, iterative, comprehensive, and transparent. The Teach-Back methodology, adapted from the Agency for Healthcare Research and Quality’s Health Literacy Universal Precaution Toolkit [28], encompasses several steps practiced by community partners in response to community consultations requested by the TL 1 research scholars. The TL 1 research scholar program is a competitive predoctoral scholarship as part of the CTSA to increase the translational research workforce and enhance career development of future leaders of the biomedical research workforce. The C-RAC’s teach-back process begins with one community partner (1) being assigned to the TL 1 research scholar who had requested C-RAC consultation services, as part of triaging, (2) having a thorough understanding of the research topic and its relevance to health disparity and health equity through iterative communication and formal tracking of activities with the TL 1 research scholar, (3) actively participating during the presentation of the research topic by the TL 1 research scholar at the C-RAC meeting, (4) presenting his/her understanding of the research topic, personal experience, and implications for community benefits of the presented research, and (5) reflecting again to demonstrate understanding and evaluate the extent to which suggestions were implemented by the TL 1 scholar who illustrates on the research results at a 4–6 month follow-up session. Teach-Back sessions led by community members of C-RAC are now implemented in programs where established and aspiring researchers formally share information with the community.

To acquire a better understanding of equity in healthcare research, community partners took an initiative to increase their knowledge about the regulatory definitions and types of research that involve human subjects as participants. This community-initiated effort culminated in 12 community partners getting certified with the human subject research training (online) provided by the U.S. Office of the Human Research Protections

The CAP around equity issues made both sides realize that there was a strong need to improve the health literacy of community around research topics presented by the academic partners. Efforts are on the way from researchers to design and implement more innovative ways to communicate their research with the community.

Inclusion

One metric of successful DEI is the increase in community representation provided by community partners on academic forums that needed community input and active participation toward a shared CAP agenda. These include community representation at the Johns Hopkins ICTR Leadership Council, National Institutes of Health (NIH) Community Engagement Alliance (CEAL) for the District of Columbia, Maryland, and Virginia Executive Committee, and the NIH CEAL Team Publication Committee.

A critical tenet of these committees is to develop and practice initiatives that incorporate community voices into their agenda. All of the above committees required involvement in activities requiring substantive time during the workday. The community representatives were given herein the opportunity to provide community voices, give feedback on issues that impact the community, and subsequently discuss these issues at the C-RAC meetings.

With these meaningful inputs and engagement throughout the entire research process, the CAP demonstrated that community input has the potential to impact funding, recruitment and retention, research participant informed consent, quality of educational materials, and dissemination of research.

Evidence of DEI in Successful Community-Engaged Research

Albeit brief, this special communication illustrates several DEI strategies toward successful and continued community-engaged research that benefits community partners directly or indirectly. Most of these strategies are initiated, implemented, and routinely monitored for quality improvement purposes, mostly by community partners. Thus far, incorporation of community inputs using DEI strategies in academic research has resulted in eleven grant proposals submitted to the National Institutes of Health and the Patient-Centered Outcomes Research Institute. Six of these applications have been awarded funds for community-based participatory research. The CAP has also contributed to twelve research publications. Table 1 shows data supporting program successes in dissemination of research findings to academic and community audiences. In addition to the C-RAC membership composition to demonstrate CAP diversity, providing research-based information to diverse consumer groups in local community markets has also strengthened the CAP. Community-initiated annual conferences (Healthy Aging), outreach activities (Day At The Market), formal feedback reflecting community concerns, as well as shared governance in the C-RAC organizational structure also reflect a growing equitable distribution of shared responsibility (Table 1). Conversely, inclusion of community partners in the decision-making process throughout the research continuum, and providing research-related training, although nascent, demonstrate the extent of inclusivity in the CAP.

Table 1.

Outcomes of community-academic partnership (CAP) activities to ensure DEI

Table 1 illustrates that the overall CAP activities embrace a DEI paradigm with overlapping activities. Overall, successful DEI in the CAP is clearly reflected by the funding awards, journal publications, and committee membership as part of a growing relationship.

To promote equity in the community-academic partnership, issues that impact the community are initiated by community partners at scheduled meetings of the C-RAC. In these interactive community grand round forums, invited community leaders present details of current health issues that affect their communities. On different occasions and upon invitation by community partners, academic partners present their research that impacts the community’s health. In both instances, feedback and suggestions from community members are noted for incorporating them into future research practices. The ongoing annual Healthy Aging Forum has been a community-initiated forum that has in recent years incorporated topics such as “sister circle” and “man cave” to discuss cutting-edge research-based applications on men’s and women’s health, respectively. These small group, open-ended, interactive sessions have been popular by overwhelming demands from the lay community in the past five years. The C-RAC is currently in the preparatory process of a Handbook of Community Engagement in Healthcare in this regard.

Benefits for Community Partners

The current structure in the CAP has been, to a large extent, focused on community consults and is initiated by academic research partners. However, in recent years, the C-RAC has been developing mechanisms for intellectual benefits to community partners. Tangible and intangible benefits received by community partners include: (1) being invited, and compensated as subsequent research team member, (2) sharing governance of the ICTR and C-RAC, (3) getting training and certifications on human subject research, (4) initiating manuscript writing processes (including this report) for peer-reviewed journals, (5) membership in national and regional community advisory boards e.g. CEAL and Community Connect, and (6) receiving financial compensation for attending C-RAC meetings.

Benefits for Researchers

CAP benefits received by academic partners include: (1) successful applications for federal, state, local, public, and private funding opportunities, (2) improved recruitment and retention of research participants, (3) streamlining of informed consent and IRB applications, (4) publications in peer-reviewed journals, acknowledging contributions from community partners.

Measuring the researcher’s ability to conduct successful community-engaged research also included a recent semi-structured survey among researchers on whether the C-RAC consultation improved the quality of their research, and whether the community consultations provided feedback on proposal development, informed consent, recruitment and retention, and dissemination. More than two-thirds reported positively on the benefits received from community consultations and inputs on participant recruitment and retention. Overall, investigators who utilized the consultation service reported a wide range of positive impacts on research projects, including ability to apply for funding, and development of long-term partnerships.

Example of Co-Learning Opportunities in CAP

Figure 3 illustrates evidence of successful CAP when utilizing the DEI paradigm. Researchers reported increased understanding of community views on research and health priorities of the community toward a successful community-engaged research. Community members stated that participating in consultations gave them an opportunity to educate researchers about the concerns of people living in their community and reported increased understanding of the research process. Figure 3 illustrates evidence of equity and inclusion via active participation, iterative discussions, strategic actions, and improved trust among the partners. Additionally, a fifty-nine percent (425 out of 719) follow-up in the project demonstrates a successful CAP resulting in participant retention when the principles of DEI are applied.

Figure 3.

Co-learning opportunities in CAP and successful DEI.