A Participatory Trust-Building Model for Conducting Health Equity Research With Rural and Urban Native American, Black, and Latinx Communities: WEAVE NM (Wide Engagement for Assessing Vaccine Equity in New Mexico)

Misinformation, lack of data transparency, and omission of community stories from mainstream media amplified COVID-19 research and vaccine distrust across pandemic-vulnerable populations. Historical glossing of cultural and linguistic differences among ethnic minorities in the scientific literature created deadly lags in effective pandemic messaging, vaccine rollout strategies, and research engagement. Using community-based participatory research (CBPR) principles, WEAVE New Mexico (Wide Engagement for Assessing Vaccine Equity in New Mexico) used long-standing relationships and proven trust-building strategies among four urban and rural Black, Indigenous, and Latinx partnerships to mobilize engagement in vaccine equity research. Our mixed-methods approach included digital storytelling with individuals and families affected by COVID-19, interviews with health care providers, and a statewide survey. We also held quarterly statewide community of practice meetings that provided opportunities for cross-sharing and mutual learning.

PLACE, TIME, AND PARTNERSHIPS

Using a racial equity theory of change,¹ our objectives were to support research on COVID-19 awareness and mistrust and to promote vaccine uptake and research participation between June 2021 and October 2022. Researchers at the University of New Mexico engaged with their long-standing community partners, including the First Nations Community HealthSource, an urban Native American health center that serves a racially diverse and large unsheltered population; US–Mexican border Latino communities; the rural Trichapter Area in the Eastern Navajo Nation; and the Albuquerque-based Black Leadership Council. Vignettes highlighted core values and innovative trust-building strategies across the four partnerships that enabled the research.

US–Mexico Border Latino Community

We regarded community trust- and relationship-building as the cornerstone of our process. We examined the responses of Hispanic and Latino communities to COVID-19 vaccination rollout through survey administration. Community partners knew the risks of entering neighborhoods and homes during the pandemic but were deeply committed to the project and anchored their strategies in confianza. From the Spanish word for “trust,” confianza connotes confidence and reliability. To build or rebuild and maintain confianza, we turned to promotoras de salud, also known as community health workers. Their vocation of supporting the well-being of their communities positioned them as trust bearers and critical intermediaries in ensuring that communities have a voice.

The promotoras’ engagement strategies preserved the cultural integrity of their communities. They reworded the National Institutes of Health’s standardized surveys to culturally relevant language. They prioritized rapport-building over data collection. These trust bearers addressed the needs of the heart, anticipating the trauma and grief they would encounter in survey questions about loss. This was soberly expressed when one remarked, “Vamos a ver quien no esta” (We are going to find out who is missing). Lastly, confianza engenders serenity and joy. The community health workers conveyed intelligence and compassion, and they united minds and hearts to uphold rigorous standards of research while respecting the participants’ humanity.

Urban Native American Community

The First Nations Community HealthSource and the University of New Mexico’s Center for Native American Health have a mutual, resilient trust as CBPR partners of 20 years. Foundational values of the relationship include a mutual safeguarding of integrity; acting in a dependable, fair, and just manner; and modeling cultural and intellectual humility.

Safeguarding mutual integrity requires recognizing and implementing values that honor “relatives” (e.g., consumers, patients), data justice principles, community in the framing of research risks and benefits, and concepts of self-determination. Both digital storytelling and catalyst filmmaking are participatory methods that actualize self-determination. Participants can choose to include or conceal their image and voice and to edit their recordings and transcripts before dissemination. Acting in a dependable, fair, and just manner involves the equitable sharing of resources, being accessible and visible, ensuring that consent is understood, and eliminating systemic barriers to participation (e.g., lack of transportation, food security, or technology access). Meeting unsheltered participants in locations convenient for them, providing bus passes and personal protective equipment, and having frequent participant contact improved participation and retention. Modeling cultural and intellectual humility involves reciprocity by cosharing study development and decision-making, building relationship capacity, creating space for cultural beliefs and practices, deferring to relatives’ knowledge, and admitting to knowledge gaps.

Urban Black Community

The North Star goals for the New Mexico Black Leadership Council are to (1) overcome the tricultural myth in New Mexico (i.e., that there are only Anglo, Hispanic, and Native American people in the state), (2) promote true multiculturalism by having the issues of Black New Mexicans be equitably addressed, and (3) see New Mexico be at the top of all of the “good” lists as relates to sustainable, thriving communities. It was important for community members to have autonomy over how and when we approached the project and for us to do so with cultural humility and respectful awareness of study fatigue in New Mexico Black communities that are either excluded or studied and analyzed by individuals outside the community. This was the first opportunity to shape the approach to the community in consultation with partners from the University of New Mexico. As a result, we exceeded our participation goals. We demonstrated that our communities could and will participate in these types of studies and projects when approached respectfully and with community members as the face and cocreators of the project’s design.

Individuals were compensated; however, most viewed the opportunity to provide information as the reward. The New Mexico Black Leadership Council was able to add a few questions to the survey to make it more meaningful to the respondents. Having trusted community messengers involved in the survey administration made it easier for most of the individuals to know about the survey and made them more willing to complete the personal questions. Assuring respondents that the data would be shared with the community and used to create better and more equitable programming also increased participation.

Trichapter Area Diné Partnership

Trust is built on and embedded in how well one honors relationships with all creation according to the Diné concept of K’e. K’e is the continuous acknowledgment of relationships with others² that affirms the importance of social networks (i.e., familial and community relationships) and honors cultural knowledge in research. The community primary investigator and coinvestigator invited their social networks to participate as part of a community research team, building relational capacity that comes from the cocreation of knowledge with community members to address community concerns. This Diné-centered CBPR approach is needed to address critical health issues while remaining resilient in the face of ongoing colonization, structural racism, and the impact of COVID-19.

Strategies involved identifying community members to invite, considering other ways to invite participants, and having critical dialogues about the overall purpose and expected research outcomes. Because Tribal health orders restricted face-to-face meetings owing to COVID-19, the community team organized Zoom meetings, inviting community members through social media, telephone calls, or e-mail. The team engaged in critical dialogues with community members in both Navajo and English about the overall purpose of the study, including discussion on Western research’s impact on Tribal communities and, most importantly, the expected harmonious outcomes of the research project for the sake of maintaining K’e.

TRUST-BUILDING STRATEGIES

Figure 1 illustrates our collective core values and our culturally tailored strategies for building trust with communities. Four core values are necessary to center community in the research process and to build trust: (1) respect and humility, (2) visibility and presence of researchers in the community, (3) confidence and reliability, and (4) cocreation of knowledge. These values are anchored by long-standing relationships between the researchers and the community partners. Our research team members are either scholars of color who are from the communities involved in the project or are scholars with long-term relationships with community partners spanning 10 to 30 years of collaborative work.

FIGURE 1—

Participatory Trust-Building Model for Conducting Health Equity Research

Note. CNAH = Center for Native American Health; CPR = Center for Participatory Research; TREE = Transdisciplinary Research, Equity, and Engagement; UNM = University of New Mexico

Sustained commitment and demonstratable action to contribute to the well-being and health of communities are fundamental to building collective trustworthiness. In each of our four partnerships, the research process is adapted to align with the local culture and to create mutual benefits, whereby each partner provides their unique skill sets and perspectives and has a clear role, thus ensuring complementariness, governance, and accountability.^3,4

In each of the four corners of Figure 1, the culturally aligned trust-building processes start from the core values then move outward toward data collection, impact, and outcomes. This trust-building process diverges from the traditional research approach in which data collection functions in some instances as the initial point of engagement with community partners or human participant recruitment. CBPR approaches with culturally aligned strategies can strengthen trust-building, especially when acknowledged as an ongoing dynamic in which trust has to be continually earned.^5,6 The trust-building strategies are the anchor for sustaining antiracist CBPR research to advance COVID-19 vaccine access, align clinical trials, and inform systems and policy change.^7,8

PUBLIC HEALTH SIGNIFICANCE

To build trust, we focused on relational capacity, community resiliencies, and social networks to expand beyond research to culturally responsive and equity-centered research that values the lived experiences of communities. Effective public health responses must

directly address people’s concerns about vaccine safety and access, and tap existing community infrastructure to make full use of trusted voices to deliver timely and accurate information about vaccines.^9(p1)