Enhancing Community Engagement in Research: A Tiered Approach

COVID-19 has shed light on the need for community-engaged research to fuel crisis and emergency risk communication in underserved settings, promote timely and effective access to testing and vaccination for marginalized communities, and reduce disparities related to leveraging data and for communication, dissemination, and building trust.^1–3 However, unethical and inappropriate research practice involving underserved communities, including historical exploitation and abuse within human participant research, has led to hesitancy and distrust in health research by historically marginalized populations. Moreover, current experiences with the medical system have contributed to hesitation by historically marginalized populations to participate in research.^4–6 Health research also has brought suspicion and uneasiness among underrepresented groups because of research perpetuating stereotypes in underserved settings through focusing on community deficits rather than strengths.

Low trust and inadequate collaboration between academic and community partners introduce additional barriers to equitable community–academic research partnerships. Authentic, trusting, and robust partnerships between community organizations and academics are therefore critical for promoting the success of interventions tackling health disparities.^4,7,8 This process is iterative and cyclical, and requires collaboration, commitment, colearning, and mutual respect by community and academic partners, as well as patience and diligence. Moreover, the process of establishing community–academic partnerships may be challenging, particularly in high-need areas, and especially when health threats such as pandemics require time-sensitive interventions.

Previous work has proposed best practices for promoting successful health interventions in marginalized communities. For example, prioritizing transparency in research goals, sharing community–academic partner ownership, ensuring frequent communication to facilitate local relevance (i.e., being culturally sensitive) in the design and dissemination of findings, and emphasizing community capacity building (e.g., giving back to the community) are well-established strategies for increasing participation in health research among underserved populations.^4,9,10 Published research also has demonstrated the importance of ensuring the transfer of skills from academic to community partners (e.g., workshops and trainings, sharing materials), leveraging data to support sustained funding initiatives, promoting self-advocacy, informing local policy changes, and establishing ongoing advisory or community coalition boards to determine shared community–academic values and research priorities.⁹

This previous work also supports community participation in health research, which has resulted in improved and more customized health care delivery and public health outcomes (e.g., precision public health).¹¹ Wide disparities in participation in health research persist among underserved populations, including racial/ethnic minorities, lower-income populations, incarcerated individuals, populations with intellectual disabilities, and those facing medical complexities.^5,6,12 Without representation by historically marginalized participants, health research is limited in its potential to combat health inequities. For example, low recruitment and retention of populations underrepresented in health research reduce our abilities to understand effective prevention and treatment of poor health outcomes and to effectively identify and deliver health care needs to heterogenous subgroups. Inadequate representation of historically minoritized populations in health research also limits the quality of data collected and impairs the validity and generalizability of study findings.^4,6 As a result, we need to continue to derive novel methods for establishing community–academic partnerships that promote research engagement in undeserved settings.

The You & Me: Test and Treat (YMTT) study presents an innovative tiered model for enhancing community engagement in health interventions in underserved populations. YMTT leverages established relationships with large, “anchor” partners that have trusted relationships with local community organizations that are rooted in the community. Through this model of tiered partnership, community members engage directly with local leaders and stakeholders (e.g., churches, schools, local coalitions, fire departments) to support study awareness, participant enrollment, and shared investment. Community organizations meet regularly and directly inform ongoing interactions related to study procedures, shifting goals and dissemination of ongoing findings. Research products align to community goals and are codeveloped and co-owned by community members. YMTT in this sense provides a case study for a novel approach to community-engaged health disparities research that supports enhanced engagement of underserved populations who are historically underrepresented in health research.¹³

A TIERED APPROACH TO COMMUNITY-ENGAGED RESEARCH

YMTT evaluates a systematic and scalable community-engaged approach to providing rapid access to COVID-19 at-home tests, education, guidance on next steps, and linkage to local treatment resources in underserved populations. YMTT is developing testing and treatment access strategies together with trusted community organizations in high-need areas based on risk assessment strategies to address barriers to test access, determine infrastructure needs, and prioritize timely testing access, awareness, education, and engagement with health systems and local resources.

YMTT aims to reduce COVID-19–related health disparities in testing and treatment access in underserved communities by supporting the timely distribution of COVID-19 tests, COVID-19 mitigation education, and access to treatment in Merced County, California, and Pitt County, North Carolina. These counties were selected on the basis of their high minority populations (63% Hispanic/Latino/Latinx in Merced County; 37% Black in Pitt County) and disproportionately high poverty rates (22% in both counties); also, 11% and 12% in Merced and Pitt Counties, respectively, lacked health insurance (national average: 8.5%).¹⁴ Both counties also had a high county-level COVID-19 risk based on the Pandemic Vulnerability Index (Pitt County: 0.60; Merced County: 0.55, index range 0–1). In addition, we have long-standing, robust partnerships with the two anchor partners (Merced County United Way and Pitt County Health Department) that were established during previously conducted community-engaged projects in both communities.^15,16

The study is being conducted from March 2023 to August 2024. The two anchor partners each coordinate directly with local partners to distribute 40 000 over-the-counter Quidel Quickvue At-Home COVID-19 tests at community-based events. Participants must reside (self-reported) within the intervention communities and be at least eight years old. Participants are recruited for the study by community partners at events led by local organizations, such as at social events (e.g., indoor festivals, health fairs, or concerts) with underserved populations. Anchor and community partners also enroll participants and distribute tests directly from their offices. Participants are provided with access to a study Web site with next-steps guidance and information on local trusted sites (e.g., pharmacies, mobile health clinics, fire departments, churches) identified by anchor partners to provide affordable and accessible COVID-19 therapeutics for those with a positive reported test. YMTT is funded by the Rapid Acceleration of Diagnostics–Underserved Populations program, which is a consortium of 143 community-engaged research projects that aim to understand and address COVID-19–related disparities in underserved populations.²

YMTT is being evaluated based on the following key elements: testing frequency, cadence of distribution of education materials, proportion of positive cases provided with local treatment resources, proportion of participants provided with linkage to community resources, and participants’ satisfaction with testing distribution events. We also are collecting the results of the distributed tests and engagement with Web sites that provide education and linkage to trusted treatment resources that are tailored to the community and based on the recommendations of the anchor and community partners. Biweekly meetings with anchor and community partners are used to determine health topics of interest within the community, and quarterly participant newsletters are shared that address these topics, in addition to testing and treatment needs and other community concerns (e.g., food insecurity, transportation challenges). In addition, as program-related issues arise within the communities, we will evaluate the YMTT team’s responsiveness to collaborate with anchor and community partners to identify, address, and ideally resolve issues and concerns.

STUDY STRENGTHS AND CHALLENGES

YMTT has made initial strides in the recruitment and retention of historically marginalized populations through its tiered model of community engagement. As of September 2023 (six months after enrollment began), YMTT has enrolled 779 participants (68.2% female; 67.8% White; 21.3% other or multiple race; 6.0% American Indian or Alaska Native; 2.9% Black; 1.8% Asian; 91.2% Hispanic ethnicity; 82.5% adults; 63.4% English language preference; Table 1). Moreover, YMTT will continue to engage participants in both Merced and Pitt Counties by leveraging its collaborations with its anchor partners to support additional partnerships with local community organizations. We will also pursue the ongoing dissemination of interim study findings (e.g., newsletters) and “hot topics” education identified through community member surveys, and hold additional listening sessions with community partners to discuss study challenges and develop community-informed solutions (e.g., digital literacy barriers to online enrollment). Consistent and honest dialogue with anchor and community partners will continue to inform shifts in enrollment strategies (e.g., adding narrated videos to support administering COVID at-home testing), newsletter and Web site content (i.e., resources for transportation to events), and improvements in participant messaging around COVID-19 mitigation.

TABLE 1—

Demographics and Other Characteristics for You & Me: Test and Treat Survey Participants

Characteristic	No.a (%)
Age, y (n = 779)
≥ 18	643 (82.5)
< 18	136 (17.5)
Gender identity term (n = 679)
Woman	463 (68.2)
Man	212 (31.2)
Otherb	4 (0.6)
Racec (n = 451)
White	306 (67.8)
Other/multiple	96 (21.3)
American Indian or Alaska Native	27 (6.0)
Black or African American	13 (2.9)
Asian	8 (1.8)
Native Hawaiian or Other Pacific Islander	1 (0.2)
Ethnicity (n = 638)
Hispanic/Latino/Spanish	582 (91.2)
Not Hispanic/Latino/Spanish	56 (8.8)
Language of survey completedd (n = 779)
English	494 (63.4)
Spanish	285 (36.6)
Where did they hear about test kit distributionc (n = 660)
A community organization	585 (88.6)
Word of mouth	59 (8.9)
Social media	17 (2.6)
Flyer	17 (2.6)
Other	13 (2.0)
Community bulletin board	11 (1.7)
Total number of zip codes represented (n = 585)	38

Note. The total sample as of September 2023 was n = 779.

^aSurvey responses were optional for participants (numbers missing: age = 0; gender identity = 100; race = 328; ethnicity = 141; language of survey completed = 0; where did they hear about test kit distribution = 119; total number of zip codes represented = 194).

^bIncludes gender nonbinary/genderqueer/gender nonconforming, 2-spirit, transgender man/female to male, and “none of these describe me.”

^cParticipants could indicate all answer choices that applied.

^dBased on surveys completed in English or Spanish.

Despite these strengths, the YMTT study has faced challenges that have introduced barriers to enrollment of underserved populations. First, the digital platform used to collect data was established recently (2021). Although it has advanced data collection and potential for bidirectional communication functionalities, delays were necessary to ensure accuracy and rigor, which led to the need for additional communication and the support of the local partners to hold testing events and enroll participants. Both leadership and staff turnover at one anchor partner institution led to challenges onboarding local partners and enrolling participants in those settings. Also, we have observed “COVID-19 fatigue,” as community members seem less motivated to enroll in a study that offers free COVID-19 tests and access to treatment. Low motivation may be attributed in part to the fact that the federal COVID-19 Public Health Emergency declaration ended in May 2023.¹⁷ Per our community partners, lower than anticipated enrollment may also be due to nearby programs and organizations that offer free COVID-19 tests without requiring study enrollment. In addition, because the projects are in communities at opposite sides of the nation, there have been challenges in arranging team meetings because of time zone differences. There have also been event cancellations and enrollment delays related to weather (e.g., major flooding in Merced County) and differences in populations served (e.g., some partners requested materials translated into languages not anticipated, such as Hmong, resulting in translation and institutional review board approval delays). Although these challenges are not atypical for community-based research, the YMTT tiered approach to study engagement has supported timely solutions that are codeveloped with anchor and community partners to ensure that the work remains current, community driven, and focused on effectively addressing inequities related to COVID-19 testing access and treatment.

CONCLUSION

Research is essential to close health disparities gaps. However, past abuses in human participant research and inequities in the health care system continue to affect participation in health research by historically marginalized groups. We cannot effectively combat health inequities in communities without establishing true partnerships that promote participation in health research by underserved populations. To foster shared power, codirecting, and mutual engagement of research that is with (rather than for) community members, researchers must find novel approaches to promote trust, celebrate community strengths, and clarify tangible community benefits. We must also ask ourselves as academic researchers and community partners, “Is the research of value to the community, will it support prevention of problems, and will it foster hope?” Similarly, “How can we combat the systemic institutional barriers to robust, authentic community–academic partnerships?” YMTT represents a novel, tiered model of community-engaged research to support community co-ownership of health research purpose and process. We propose that this approach prioritizes community interests, fosters authentic and sustained collaboration between community partners and academic researchers, and promotes community member engagement to support effective and efficient health interventions to close disparity gaps.