Building and sustaining trust across communities: Lessons from a large-scale, community-based cancer needs assessment in New York City
Department of Population Health, NYU Grossman School of Medicine
Vilcek Institute of Biomedical Research, New York University Grossman School of Medicine
*Address for Correspondence: Ashlin Rakhra, MPH, Department of Population Health NYU Grossman School of Medicine 180 Madison Avenue New York, NY 10016, Email: Ashlin.Rakhra@nyulangone.orgAbstract
Background
Trust is central to healthcare engagement yet remains underexamined in the context of large-scale community needs assessments. The Cancer Community Health Resources and Needs Assessment (Cancer CHRNA) was developed and implemented to identify multilevel determinants for cancer prevention and disparities; and examine the structural and system levels factors influencing healthcare access and prevention behaviors across populations represented in New York City. This study examines how trust emerged as a dominant theme and the relational and technical strategies community health workers (CHWs) and community-based organizations (CBOs) used to establish and sustain trust during survey implementation.
Methods
Cancer CHRNA was implemented in community– and clinic-settings in nine languages: English, Arabic, Bangla, Chinese-Simplified/Traditional, Haitian-Creole, Korean, Spanish, Russian, and Urdu by bicultural and bilingual CHWs, in partnership with a network of CBOs. This qualitative process evaluation draws on data from CHW interviews, field notes, and a research team focus group. Analysis was guided by the Consolidated Framework for Implementation Research (CFIR), with secondary coding informed by Metz et al.’s theoretical model for trusting relationships, which distinguishes relational and technical strategies of trust-building.
Results
Three overarching themes related to trust emerged: 1) CHWs as trusted messengers embodying trustworthiness; 2) the role of CBO partnerships in enhancing trust; and 3) the development of sustained trust with both CBOs and community members. Across these themes, CHWs and CBOs employed relational strategies (authenticity, empathy, bi-directional communication, vulnerability) and technical strategies (cultural and linguistic concordance, demonstration of expertise, frequent interactions, responsiveness). These strategies activated trust, which in turn enabled successful recruitment and sustained engagement.
Conclusion
To our knowledge, Cancer CHRNA is the first needs assessment to assess cancer behavioral and social priorities in nine languages, providing a unique exploration of the role of trust within such an assessment. Findings demonstrate that culturally and linguistically concordant CHWs, working in partnership with trusted CBOs, were central to fostering trust across the relational and technical strategies of trust building and facilitating broad community participation. By highlighting trust as the mechanism underpinning recruitment success, this study offers practical insights for designing future multilingual, community-based assessments.
Article notes
Competing Interest Statement
The authors have declared no competing interest.
Funding Statement
The Research reported in this was supported in part by the National Cancer Institute of the National Institutes of Health award number P30CA016087, the Centers for Disease Control and Prevention award number U01DP006643, and the Dune Road Foundation, Inc.
Introduction
Trust is essential to delivering health care and improving health outcomes(1–3). Lack of trust in the healthcare system is a growing and complex problem with historical and contemporary roots involving individual and community encounters with the government, medical institutions, and health care providers. Trust can impact one’s utilization of medical care, medication adherence, continuity of care, and self-reported health status(3–7). As such, it is increasingly being recognized as a critical aspect of medical care and greater attention has been placed on understanding and improving it.
Community health workers (CHWs) are widely acknowledged as trusted messengers within their communities (8–12). The American Public Health Association (APHA) defines a CHWs as “frontline public health worker who is a trusted member of and/ or has an unusually close understanding of the community served, enabling them to act as liaisons between health and social services and the community.”(10) Their cultural and linguistic concordance, personal lived experiences, and deep community ties allow them to serve as bridges between healthcare systems and historically underserved populations (8–12).
Similarly, community-based organizations (CBOs) serve as liaisons for a community and provide educational, social, or related services to members of the community(8). Being embedded within communities, CBOs identify community priorities and understand the culture, language, community norms, and best strategies for outreach and engagement. For marginalized communities who report a lack of trust in medical institutions, CBOs can serve as a trusted source of health messaging and foster trust between individuals and healthcare systems (8). CBOs and community-engaged processes are key to building and sustaining trust in research collaborations(13). Despite their central role in community-engaged research, the specific processes through which CHWs and CBOs build and sustain trust during large-scale needs assessments remain underexamined.
Immigrant populations are particularly underrepresented in research and face well-documented disparities in cancer prevention and screening due to language barriers, limited access to care, and a lack of culturally tailored services (14–16). In New York City, where over one-third of residents are foreign-born (17), these challenges underscore the need for research approaches that are community-centered, linguistically accessible, and explicitly designed to build trust.
The Cancer Community Health Resources and Needs Assessment (Cancer CHRNA) was developed to address these disparities using a community-based participatory approach (CBPR). Bilingual and bicultural CHWs partnered with CBOs to co-develop the survey, identify recruitment sites, and lead multilingual data collection across nine languages. While the assessment aimed to identify determinants of cancer prevention, assess structural factors that influence healthcare, and document community priorities, our qualitative process evaluation revealed that trust emerged as a central theme across implementation.
To evaluate these dynamics, we applied the Consolidated Framework for Implementation Research (CFIR) (18) to examine multilevel contextual influences on implementation, and Metz et al.’s the theoretical model for trusting relationships and implementation (19), to analyze relational and technical strategies CHWs and CBOs used to build and sustain trust.
This paper aims to: 1) describe how trust emerged across qualitative data sources; 2) highlight the relational and technical strategies used by CHWs and study partners to build and sustain trust; and 3) discuss how these findings can inform the design and implementation of future community-based needs assessments seeking to engage populations with lower levels of institutional trust.
Methods
Needs Assessment Overview
The Cancer CHRNA was implemented from July 2021 to November 2022 through a collaborative effort involving multiple departments within a major metropolitan New York-based academic healthcare system, including a nationally recognized cancer center and one of the largest Federally Qualified Health Centers (FQHCs) in the U.S. Cancer CHRNA was implemented in clinic and community-settings in nine written languages: English, Arabic, Bangla, Chinese-Simplified and Traditional, Haitian-Creole, Korean, Russian, Spanish, and Urdu (see Table 1). To our knowledge, the Cancer CHRNA is the only needs assessment that assessed cancer-related social and behavioral priorities and risk factors in nine languages.
Cancer CHRNA was designed as a large-scale, community-engaged study to identify determinants of cancer prevention and disparities, assess the role of racial discrimination in healthcare access and prevention behaviors, and document community-level health priorities among racial and ethnic minoritized and immigrant populations. A second optional module examined how structural factors affect daily life, and access to the healthcare system, and the food system.
At its foundation, Cancer CHRNA employed a community-based participatory research (CBPR) approach, engaging community partners and leveraging bilingual and bicultural CHWs to establish robust community–clinical linkages. CHWs were integral to the study team: they reviewed and refined the survey instrument, identified and affirmed CBO partners, advised on community-based recruitment sites, and led data collection. Data were collected in both clinic and community settings in nine written languages: English, Arabic, Bangla, Chinese (Simplified and Traditional), Haitian-Creole, Korean, Russian, Spanish, and Urdu (see Table 1).
Study Methods
This study is part of a qualitative process evaluation of Cancer CHRNA and was led by an external evaluator. The evaluation aimed to understand implementation processes, particularly the role of trust, from the perspective of CHWs who led recruitment and data collection efforts.
We applied the Consolidated Framework for Implementation Research (CFIR) to guide our evaluation of implementation factors across individual, organizational, and community levels(18). As trust emerged as a dominant and cross-cutting theme, we incorporated the Theoretical model for trusting relationships and implementation(19) to further interpret the trust-building strategies used by CHWs and CBOs.
Data Sources
Data from this analysis were drawn from three qualitative sources: 1) Field notes documented by CHWs during the implementation process, capturing real-time insights about recruitment, interactions with participants, and adaptations in outreach strategies. Field notes were used to guide in-depth interview questions. 2) In-depth interviews with four bilingual and bicultural CHWs representing the four largest linguistic communities in the study (Russian, Chinese, Haitian-Creole, and Korean). Interviews lasted 60-90 minutes and explored implementation strategies, community engagement, challenges, and reflections on trust-building. 3) A focus group with key research team members to discuss the development and implementation of Cancer CHRNA, including the structural factors module, partnerships, translation processes, and reflections on building community trust.
Interview guides and focus group protocols were semi-structured and designed to capture both planned and emergent elements of implementation. Guides are included in the Supplementary Materials.
Participants
We purposively selected CHWs with the highest recruitment numbers and most sustained engagement in the implementation process. Table 1 provides demographic and background information on the CHWs interviewed, including their years of experience, language proficiencies, populations served, and CBO partners.
Data Analysis
All interviews were recorded via Zoom, transcribed verbatim, and analyzed using a template analysis approach based on a priori themes of constructs from CFIR (18), while allowing for emergent themes from the data (thematic analysis).
As the theme of trust emerged repeatedly across all CFIR domains, we conducted an additional round of focused coding using Metz et al. model for trusting relationships and implementation (19). This model articulates two core mechanisms of trust-building: 1) Relational strategies (e.g., authenticity, bi-directional communication, empathy, vulnerability) aimed at strengthening the mutuality and quality of relationships; 2) Technical strategies (e.g. demonstration of expertise, frequent interactions, responsiveness) focused on demonstrating reliability, competence, and credibility (see Figure 1). This model’s theory of change suggests that the consistent use of relational and technical strategies fosters positive affect, mutual understanding, and sustained engagement, key precursors to effective implementation.
Three trained researchers (AR, YY, and DM) independently coded each transcript using the developed codebook. We coded using the codebook, compared our code applications and assessed interrater reliability through a shared understanding and consensus on the applications and revised our codebook. Dedoose software was used for the qualitative coding process.
Results
We analyzed four in-depth interviews with CHWs serving Russian, Chinese, Haitian-Creole, and Korean-speaking populations, as well as one focus group with the research team. Although the field notes, interviews, and focus group explored a broad range of implementation topics, trust emerged as a central theme across all linguistic and cultural groups.
Three key themes captured how trust was established and sustained during the needs assessment: 1) CHWs as trusted messengers embodying trustworthiness; 2) CBO partnerships as bridges to institutional trust; and 3) Sustaining long-term trust among CHWs, CBOs, and participants. Each theme was supported by specific relational and technical strategies aligned with Metz et al.’s theoretical model(19).
CBO Partnerships: Building and Enhancing Trust
One of the most prominent themes that emerged from the data was the importance of building strong partnerships with CBOs and how that was key to building, enhancing, and maintaining trust among participants. CBOs were longstanding and recognizable presences within their communities, and their involvement functioned as a form of organizational endorsement that reassured participants of the CHW’s and needs assessments’ credibility.
CHWs emphasized that CBOs acted as trusted sources. Their embeddedness and continued presence in the community made participants more comfortable engaging with a research initiative affiliated with them. This dynamic reflects technical strategies of frequent interactions and responsiveness, as CBOs facilitated ongoing connections between the CHWs and community members.
“And also I would say the CBOs some of them been in that community for so long, and have been very helpful. So, me being there, or I feel like they all work through the community and then bringing someone I feel like they kind of like, you know trust that.”
CBOs also enhanced perceptions of reliability. Participants’ trust in CBOs transferred to CHWs, who were often introduced through these partnerships. CHWs described how participants felt more confident sharing personal information when it is clear the work was linked to a known and trusted community organization.
“So they should see me as a reliable person, because they know me, and they know they trust the [CPC] organization. And I am not from somewhere that it might be like a fraud or somewhere, you know, that might steal their information. This is one of the big things for Chinese immigrants. They often receive calls from nowhere, and asking about their personal information, and they saw the news that there are people that got their identities stole because of giving out information.”
Together, CBO partnerships served as bridges between the academic health system and the community, reinforcing the credibility of CHWs and creating access points for community members who might not otherwise be engaged in healthcare. (See Table 3 for exemplar quotes).
Sustaining Trust Over Time
Beyond establishing initial connections, CHWs and CBOs demonstrated how trust can be maintained and deepened across the timeline of the Cancer CHRNA. Sustained trust was evidenced in two primary ways: long-term collaboration with CBOs and continued engagement with participants.
First, CHWs described how long-term collaboration with CBOs provided stability and continuity. Many partnerships were built on years of prior work together, allowing both parties to rely on established rapport. This longevity reflected technical strategies of frequent interactions and reliability, with CHWs and CBOs maintaining contact through collaboration. These trusted relationships created pathways for recruitment and reinforced mutually beneficial relationships.
Second, CHWs emphasized how trust carried over into continued engagement with participants. Even when new module, such as the structural factors that influence healthcare questions, were introduced later in the assessment, participants who had built rapport with CHWs were willing to return and contribute additional data. This continuation was enabled by relational strategies of authenticity and technical strategies of frequent interactions.
Overall, the sustainability of trust demonstrates that relational and technical strategies were not one-time efforts but cumulative processes. By nurturing trust over time, CHWs and CBOs created conditions for ongoing collaboration between communities and institutions, with implications for future initiatives beyond Cancer CHRNA. (See Table 4 for exemplar quotes.)
Discussion
To our knowledge, the Cancer CHRNA is the only community-based needs assessment conducted in nine languages with community input to examine cancer-related behavioral and social priorities, offering a unique lens on the role of trust within such an initiative. Our findings underscore the centrality of trust as a mechanism that enabled meaningful participation across immigrant communities, particularly, when addressing sensitive topics such as cancer screening disparities and structural factors that influence access to health and food systems. Trust was not incidental to implementation but the process through which recruitment, engagement, and sustained collaboration became possible.
Three overarching themes illustrated how trust was built and sustained: 1) CHWs as trusted messengers embodying trustworthiness; 2) the role of CBO partnerships in building and enhancing trust with participants; and 3) sustaining trust over time. Across these themes, CHWs and CBOs employed relational strategies (authenticity, empathy, bi-directional communication, vulnerability) and technical strategies (demonstration of expertise, frequent interactions, responsiveness, reliability), consistent with Metz et al.’s theoretical model (19). These strategies activated trust, which in turn shaped participant willingness to engage and laid a foundation for continued collaboration.
Our results are consistent with prior literature demonstrating the value of cultural and linguistic concordance, long-standing community partnerships, and CHWs’ role in bridging communities and institutions (8, 11–13, 20, 21). Additionally, this study contributes several new insights to the literature. First, it shows how cultural and linguistic concordance operated simultaneously as a relational and technical strategy. Relationally, shared language and cultural background displayed authenticity and fostered bi-directional communication, making participants more comfortable sharing their perspectives. Technically, it demonstrated expertise as CHWs could accurately explain study content, address questions, and adapt their approaches to cultural norms. This dual function was particularly impactful among the diverse immigrant communities included in Cancer CHRNA where there is documented mistrust research institutions and healthcare systems, and language barriers often deter research participation (22–26). Notably, this needs assessment was the first to implement across nine different languages and incorporate cultural and linguistic concordance for all.
Second, our findings illustrate how CBO partnerships act as organizational bridges, transferring credibility to CHWs and creating access points for community members who might not otherwise be engaged with healthcare systems. Participants’ trust in CHWs was reinforced by the longstanding presence of CBOs, underscoring an interconnected trust dynamic. Third, the study highlights the sustainability of trust, with participants re-engaging in new modules and CHWs describing partnerships with CBOs as mutually beneficial. Together, these findings affirm and add nuance to Metz et al.’s model by demonstrating how relational and technical strategies can be applied in multilingual, diverse, immigrant communities.
Empathy emerged as a critical relational strategy. By approaching participants with patience and kindness, CHWs signaled respect and created a sense of safety that encouraged disclosure on sensitive topics such as cancer screening, disparities, and structural challenges experienced in accessing quality and responsive care and resources. Empathy also functioned as a technical strategy as it created an environment to express responses to challenges questions, strengthening both engagement and data quality. This finding resonates with Relational Cultural Theory, which conceptualized empathy as mutual and growth-fostering (19, 27). In practice, CHWs’ empathic approaches created reciprocal exchanges in which participants felt heard and respected, CHWs deepened their understanding of community perspectives. This reinforced trust and sustained participants’ willingness to engage. This empathetic approach was particularly important when working with immigrant communities, many of whom historically have higher levels of mistrust towards healthcare systems and institutional research programs (22–26).
The significance of long-standing partnerships with CBOs aligns with CBPR findings which emphasize the value of existing community networks (28, 29). CBOs consistently provide community members continuity of trust through sustained engagement, communication, services, and advocacy (8, 30). The utilization of robust community networks was a key factor in the successful recruitment in Cancer CHRNA. Reliability prominently emerged in relation to both CHWs and CBOs. CHWs were perceived as reliable due to their established presence within the community. Moreover, participants’ perception of CHWs’ reliability was further enhanced by the CHWs’ affiliations with trustworthy CBOs. This interconnected trust dynamic suggests that the reliability of CBOs, recognized through their consistent community engagement and advocacy, was instrumental in augmenting the perceived reliability of CHWs. These results are consistent with CBPR literature and studies discussing increased credibility and sustainability when partnering with CBOs to address disparities (8, 29, 31–33).
The results highlight several implications for the design and implementation of future community-based needs assessments and interventions. Trust must be recognized as a core mechanism of implementation, a culmination of intentional use of relational and technical strategies, rather than a background condition (19). Central to this process is the role of CHWs, who should be positioned as key implementers of trust-building by leveraging cultural and linguistic concordance to foster authentic connections with participants. At the same time, partnerships with CBOs are essential, as these organizations act as bridges between communities and institutions, extending credibility to CHWs and facilitating access to populations who might otherwise remain underserved. Finally, sustaining trust requires long-term commitment: trust is cumulative, built through mutually beneficial collaboration, frequent interactions, and ongoing engagement that extends well beyond a single project.
Future Directions
Maintaining trust beyond the needs assessment requires active dissemination (29). Following Cancer CHRNA, study reports were shared with participating communities, CBOs, and community advisory boards. Continued transparency and reporting back of findings are essential for sustaining trust and adhering to CBPR principles (28, 29). Future research should build on these practices, embedding relational and technical strategies into the design of interventions that aim to build and sustain trust, reduce cancer disparities, and advance health equity among immigrant populations.
Strengths and Limitations
Our study had many strengths. First, to our knowledge, Cancer CHRNA is the first large-scale community-based cancer screening needs assessment focused on multiple priority groups and translated into multiple languages. This is particularly relevant given the disparities in cancer screening among immigrant populations in NYC (14, 15, 34). This study provides specific insights into successful trust building relationships among CBOs and participants across various diverse communities. Our study does include some limitations. First, we only interviewed four of the eight CHWs involved in implementation process as these were the full time CHWs and communities with the highest recruitment for the survey. The four CHWs included had greater collaborative involvement in each stage of the needs assessment but especially, in the implementation process. As such we were able to reach thematic saturation with the interviews conducted. Second, we did not interview Cancer CHRNA participants or CBO partners directly, but rather participant and CBO perceptions and feedback were reported by CHWs. However, our goal was to understand the perspectives of those who were engaged in the implementation process and their perspectives of the trust building process. These findings would be strengthened by the inclusion of additional diverse perspectives, learning about trust directly from community members as well as CBO partners.
Conclusion
This study demonstrates that the success of Cancer CHRNA was rooted in the ability of CHWs and CBOs to build and sustain trust among diverse communities. Through relational strategies such as empathy, authenticity, bi-directional communication, and technical strategies such as frequent interactions, responsiveness, and demonstration of expertise, CHWs embodies trustworthiness and created safe spaces for participation. Partnerships with longstanding CBOs further enhanced credibility and opened access to community members who might not otherwise engage in academic or healthcare systems. Sustained, mutually beneficial relationships with both CBOs and participants ensured continued engagement throughout the assessment.
By highlighting how trust operated as the mechanism that made recruitment and participation excel, this study contributes practical insights for the design of future community-based needs assessments. Centering CHWs and CBOs in recruitment is not only effective but essential for building trust in diverse, multilingual communities and ensuring meaningful community engagement in research.
Declarations
Ethics approval and consent to participate
Consent for publication Not applicable.
Availability of data and materials
Data are available upon request.
Competing Interests
The authors have no competing interests to declare.
Data Availability
All data produced in the present study are available upon reasonable request to the authors.
ACKNOWLEDGEMENTS
The Research reported in this was supported in part by the National Cancer Institute of the National Institutes of Health award number P30CA016087, the Centers for Disease Control and Prevention award number U01DP006643, and the Dune Road Foundation, Inc.
The authors would also like to thank the following Community Health Workers, Support Staff, Interns, and Community-Based Organizations for their contribution and commitment to Cancer CHRNA and this research.
CHWs: Alzaharaa Ahmed, Alice Liang, Alex Trifonov, Cecelia Chabani
Interns and support staff: Abiha Kazmi, Deborah Min, Kimberly Charlies, Shumi Ahkter, Sumbal Marry, Yaena Song, Yousra Yusuf
PCC Cancer Action Network (CAN):
AMERICAN CANCER SOCIETY
AMERICAN ITALIAN CANCER FOUNDATION
ARAB AMERICAN ASSOCIATION OF NY
ARAB AMERICAN FAMILY SUPPORT CENTER
ARTHUR ASHE INSTITUTE FOR URBAN HEALTH
ASIAN AMERICANS FOR EQUALITY
BEDFORD STUYVESANT RESTORATION CORPORATION: RESTORATION PLAZA
BETTYS BREAST CANCER FOUNDATION
BLACK HEALTH MATTERS
BROOKLYN CENTER FOR QUALITY LIFE
BROOKLYN CHINESE-AMERICAN ASSOCIATION
BROOKLYN COMMUNITY PRIDE CENTER
BROOKLYN PUBLIC LIBRARY
CALLEN-LORDE
CAMBA
CANCER NETWORK
CARIBBEAN EQUALITY PROJECT
CENTER FOR FAMILY LIFE
CHEEKY CHARITY
COJECO
EDITH AND CARL MARKS JEWISH COMMUNITY HOURS OF BENSONHURST
ERASE RACISM NY
FAMILY & CHILDREN’S ASSOCIATION
FAMILY SERVICE LEAGUE, LI
FIFTH AVE COMMITTEE
FOOD BANK FOR NYC
FORT GREENE COUNCIL
GRAND STREET SETTLEMENT
HEALTHFIRST
HISPANIC COUNSELING CENTER
HOMECREST
HOPE FOR PINK
ISLAND HARVEST
JASA
KOREAN COMMUNITY SERVICES
LA JORNADA
LGBT NETWORK
MAKE THE ROAD NY
MEXICAN COALITION
MIXTECA
MORIAH CITY CHURCH
NASSAU COUNTY DEPARTMENT OF HEALTH
NASSAU COUNTY POLICE
NATIONAL SOCIETY OF HEALTH COACHES
NEW IMMIGRANT COMMUNITY EMPOWERMENT
THE NEW YORK COMMUNITY TRUST
NYC DEPARTMENT FOR THE AGING
NYC DEPARTMENT OF HEALTH AND MENTAL HYGIENE
OFFICE OF THE NYC PUBLIC ADVOCATE
ONE LIFE CHRISTIAN CHURCH
OUTREACH NEW YORK
PLANNED PARENTHOOD OF GREATER NY
PUBLIC HEALTH SOLUTIONS
QARAVAN
RAINBOW HEIGHTS
RAISINGHEALTH
THE RETREAT
RISEBORO
ROCKVILLE CENTRE BREAST CANCER COALITION
SALAM ARABIC CHURCH
SALVATION ARMY
SEPA MUJER
SHARE
SHORE FRONT YM-YWHA
SUFFOLK COUNTY DEPT. OF HEALTH SERVICES
TRANSLATINX NETWORK
UNIVERSITY SETTLEMENT
WOMEN’S EMPOWERMENT COALITION OF NY
YEMENI AMERICAN MERCHANTS ASSOCIATION
YES COMMUNITY COUNSELING CENTER