Community-Based Organizations as Trusted Messengers in Health

Abstract

Trust is a key component in delivering quality and respectful care within health care systems. However, a growing lack of confidence in health care, particularly among specific subgroups of the population in the United States, could further widen health disparities. In this essay, we explore one approach to building trust and reaching diverse communities to promote health: engaging community-based organizations (CBOs) as trusted community messengers. We present case studies of partnerships in health promotion, community education, and outreach that showcase how CBOs’ programs build and leverage trust in health care systems through their workforce, services, and engagement with the community.

Building Trust

Trust is a key component in delivering quality and respectful care within health care systems. Trust in health care includes beliefs that providers and organizations have characteristics of honesty, competence, and good communication and that they maintain confidentiality.¹ Higher levels of trust in health care environments are associated with greater service utilization, improved provider-patient communication, and better health outcomes among patients.² However, a growing lack of confidence in health care, particularly among specific subgroups of the population in the United States, could further widen existing health disparities.³ To achieve health equity, strategies to rebuild trust and reach diverse communities are needed. One approach to bridge the gap between health care systems and such communities is for health care systems to partner with messengers who are trusted among community members. In this essay, we explore the role of community-based organizations (CBOs) as trusted community messengers and present case studies of partnerships in health promotion, community education, and outreach. We conclude with lessons learned and best practices for engaging trusted messengers for improved community health.

Trust in Health Contexts

Within health contexts, two facets of trust can be distinguished: trust in social institutions by individuals and communities and interpersonal trust, such as between patients and providers.⁴ Trust in institutions can be influenced by factors such as news media and past experiences within institutions.⁵ Historical legacies of abuse, such as unethical and forced experiments and segregated health care facilities, and concerns that medical institutions and personnel represent members of the dominant, White culture have led to group-based mistrust of institutions among minoritized populations.⁶ Such factors also influence interpersonal trust, which is often the result of direct, repeated interactions with individuals. This trust is influenced by characteristics of health care system employees, including their professions, perceived competence, communication styles, and concern toward the patient’s well-being.⁷ Between patients and health care professionals, similarities in identity can be crucial to trust. People are often more willing to trust those who are similar to them, taking shared aspects of identity, such as race or ethnicity, as signals of shared values and interests. This can be particularly true for minoritized groups. Additionally, privacy concerns and fears of health-information disclosure affect individual willingness to trust both individuals and institutions.⁸ How these factors influence trust is complex; trust in institutions can influence trust in individuals, and vice versa.⁹ These different forms of trust interact and influence each other to form varying spectrums of trust within health contexts, all of which play roles in the trusted-messenger relationship.

How does trust vary by subgroups?

Trust in health care systems and providers varies by patient subpopulations, including those defined by immigration status, race or ethnicity, gender, sexuality, and ability or disability. Another dimension of trust is that it may vary by providers and health care systems depending on patient experiences. Among immigrant populations, trust is often influenced by immigration policies and individual status, specifically for undocumented immigrants, who face considerable barriers and risks in accessing health care services.¹⁰ Undocumented immigrants are not able to apply for most federal or state health insurance programs and instead must rely on federally qualified health centers, private charities, and emergency rooms for their health care needs.¹¹ Navigating multiple networks of care can cause considerable stress, especially when completing required forms and applying for care, as some patients may worry about revealing their undocumented status and being reported to immigration authorities.¹² Related to this concern are traveling to and using health care services, as immigration agents have been known to monitor public transportation and health care sites for undocumented immigrants and to arrest them onsite.¹³ The fear of being detained and deported and concern that health care systems and providers may be cooperating with immigration authorities have led to underuse of health care services.¹⁴

Other barriers to trust include negative or discriminatory encounters with health care systems, which are common for members of immigrant, minority racial and ethnic, and LGBTQIA populations. Immigrant populations report experiences with xenophobia, and patients with limited English proficiency recount dismissive care from health care employees.¹⁵ Racism has been identified as a salient issue among Asian, Latino, and African American populations in their interactions with health care systems.¹⁶ Examples of encounters perceived as racist have included inadequate responses to patients’ concerns, poor provider communication, and provider assumptions regarding patients. LGBTQIA patients reported similar negative experiences.17 These experiences may vary, as patient-provider racial concordance may contribute to improved communication between patients and providers.¹⁸ Another related facet is the stigma associated with certain conditions, such as HIV/AIDS and substance-use disorders, which may contribute to negative experiences with health care systems.¹⁹ The socioeconomic status of patients is also relevant to trust in providers, with patients from lower socioeconomic backgrounds having reported lower levels of trust in health care providers than have patients with higher incomes.²⁰ These varying levels of trust among patient populations reflect disparate levels of access to and quality of health care services.

How do we address mistrust in the health care system?

Addressing mistrust in health care environments is complex and requires strategies at the institutional, community, provider, and patient levels. One strategy to address mistrust in health care information is to focus on who is delivering health messages. Having credible, effective, trusted organizations or individuals deliver messaging is key in health care communications. Trusted messengers take many forms. They can be organizations or individuals. Health care organizations, clinicians, scientists, and government health agencies often serve as trusted messengers, respected because of their expertise. And while health professionals are cited as the most trusted sources of information^,21 those with mistrust in the health care system often seek information outside it. In many cases, family, friends, community leaders, and organizations play roles as trusted messengers.²² In this essay, we focus on CBOs, organizations that represent segments of a community and are often nongovernmental. The communities CBOs serve are typically within specific geographical boundaries, are based on common interests, and are populations that are disadvantaged and stigmatized.²³ CBOs provide educational, social, or related services to individuals in the community. They can be charitable, social service, or faith-based organizations. Embedded within communities, these organizations understand the culture, languages, and best strategies for engaging with the community each serves. One of the common roles for CBOs is being trusted messengers conveying verified health information and listening to issues facing their communities through their education, outreach, and other services.

Building and maintaining trust between health care systems and CBOs.

Trust between health care systems and CBOs is a requisite for CBOs to reach community members with verified health education and resources. Health care systems have interactions and develop relationships and partnerships with CBOs through which trust develops. Agencies funding research, such as foundations and governmental organizations; federal and state programmatic agencies; and health policies have prioritized creating links between communities and clinics and have increasingly required partnership between health care systems and CBOs. For example, New York State’s Delivery System Reform Incentive Payment program, which informs Medicaid implementation, requires what the program refers to as “community needs assessments” and engagement with CBOs. A CBO is often in the same catchment area as the patients served by the health system with which the CBO is partnered. So, their “clients” are the same. Social work and other care-management services are often familiar with local CBOs as they are making referrals to meet patients’ social needs. Health systems that are safety-net settings (such as Federally Qualified Health Centers and public hospitals) have a history of community engagement and partnership with local CBOs. Academic medical centers often have research partnerships with CBOs. Connections between these centers and their local communities can allow for equitable partnerships to be created and sustained and can create commitments to action outside of research, such as advocacy.²⁴ It is through these varied interactions that both parties learn to initially trust each other and through which trust is constantly reinforced.

Trust is built between health care systems and the community when health care systems truly recognize and acknowledge the expertise and worth of the community and see that true relationships include equitable sharing of resources. Often, community members will hear that their input is important and that their voices matter, but the health care systems’ actions may contradict these statements. From the perspective of a CBO, if, for instance, doctors’ office hours conflict with the work hours of most community members, trust is built when the health care system responds to feedback from the CBO by changing its hours to accommodate community members. If the system responds by stating that it hears the community, yet it makes no accommodations, trust is undercut. In partnerships, trust gets eroded when funding awards mandate community engagement and programming yet miniscule amounts go to the CBOs or those who are actively engaged in reaching the community—with the expectation that these CBOs can make due with such limited resources, while large sums go to run the health care systems. A health care system’s trust in the community is enhanced when the community members engage the system and are open to working with them to improve the health of those within their community. Trust is also enhanced when community members work in partnership with the health care system to improve service delivery while acknowledging the dedication or commitment of those within the system to improving health care and outcomes for individuals. And again, this trust building is dynamic; it happens constantly and must be sustained through the actions of each party over time.

The flow of information and trust between CBOs and community members.

The trusted-messenger relationship between CBOs and community members facilitates both institutional and interpersonal trust. CBOs themselves play the role of trusted messengers. Earning their reputations through engagement within communities, these organizations are trusted as institutions.²⁵ CBOs also hire and work through trusted messengers. Staff members are often themselves members of the communities they serve, have earned trust through working with the organization, or have a history of commitment to the interests of the community.²⁶ CBOs also develop relationships with other trusted messengers to disseminate information.²⁷ For example, when CBOs want to reach out to communities beyond those they immediately serve, partnering with trusted local leaders and organizations can extend their reach.

CBOs serve as trusted messengers to community members under various circumstances. In many instances, health information may not be accessible to community members. One barrier may be lack of knowledge of health information due to lack of exposure. For example, individuals may not be connected to the health care system or have a regular provider. In other cases, medical information is not made available to community members in a language they understand.²⁸ And even when health information is made readily available in the languages of a community, health literacy can be a problem. Technical terms in health require more than just translation. Explanations are needed to ensure that message recipients not only understand information but also use it to make well-informed decisions about their health.²⁹ This may require having more nuanced conversations and guiding individuals in navigating the health care system. Additionally, the message and its delivery may need to be culturally tailored to communities.³⁰ This involves respecting cultural uniqueness, understanding contexts, and using culturally specific examples.³¹ In other cases, valid health information may not be coming from trusted sources, and endorsement or delivery by trusted messengers is needed.³² And lastly, CBOs may work with partners who need health information to reach more diverse audiences but lack access to these populations.³³ For example, government or health care organizations often partner and contract with CBOs to conduct outreach and education.

A critical feature of the trusted-messenger relationship is the feedback loop through which information flows. CBOs are in continuous dialogue with their community members as they provide services. Through these activities, CBOs often serve as trusted messengers passing along health information in culturally accessible ways, either directly or funneled through other trusted partners.³⁴ But the key to how these organizations earn trust is by going beyond disseminating information. They listen to the concerns of their communities and advocate on their behalf. They communicate community concerns to the health care systems and work to identify solutions with key stakeholders. CBOs serve as representatives of patients in the development of health care systems and research and provide opportunities for public engagement on these topics.³⁵ For example, at the academic medical center NYU Langone, for which three of us (Michelle M. Chau, Naheed Ahmed, and Nadia S. Islam) work, experiences with CBOs have shaped research and influenced aspects of the health care system. Collaborations with community organizations and community advisory boards have helped to ensure that research is responsive and interventions are appropriately tailored to the needs of communities. Investigators are encouraged to seek feedback from community members on their research studies. Such collaborations have influenced the NYU Langone workforce and increased the hiring of community health workers within the health care system to work with CBOs. Additionally, CBOs play important roles in policy-making, bringing health care issues directly to government actors. Many of these CBOs are also active in community organizing, working to mobilize and build capacity among their community members, and supporting campaigns for policy change. In contrast, organizations that simply disseminate information may be doubted in their commitment to the interests of the community.

Case Studies of CBOs as Trusted Messengers

Case studies can illustrate variations on the trusted-messenger model and provide lessons for building trust. Consider the programs and partnerships of three CBOs, each of which one of us works for, as explained below.

Arthur Ashe Institute for Urban Health.

The Arthur Ashe Institute for Urban Health, of which one of us (Marilyn Fraser) is the chief executive officer, addresses health disparities through community outreach and education, facilitating behavior change and expanding access to care among the most vulnerable populations in urban areas. AAIUH’s Barbershop Talk with Brothers is a community based initiative to promote men’s health, with barbershops in Brooklyn, New York, as the venues. The program uses grassroots strategies to engage men’s interest and encourages them to seek health screenings and advocate for healthier communities. The initiative is an academic-community partnership with State University of New York Downstate Medical Center and local businesses.

Barbershop Talk with Brothers began as an HIV prevention program for heterosexual Black men. Barbershops were identified as acceptable venues for health promotion. They are trusted community settings for Black men, and barbers are viewed as trusted community advisors who are willing to engage with clients in health education and outreach. Specific barbershops were selected by the program through canvassing neighborhoods and based on recommendations from other barbers. The program works with Black barbers to deliver culturally and linguistically appropriate education and emphasizes the importance of the barbers’ role in promoting health and delivering messaging within their own communities. As part of BTWB, barbers received training to serve as health advocates who can accurately and confidently discuss HIV with clients. The program creates resource guides that provide information on social determinants of health and other community resources; these guides are placed in the barbershops for distribution. The program leverages the barber-client relationship to refer clients to HIV health education programs hosted by AAIUH and State University of New York Downstate Medical Center. Outreach staff are available to facilitate navigation and referrals to health and other services. AAIUH also partners with organizations that provide mobile units for health testing and screenings.

The BTWB HIV education intervention itself was developed by AAIUH in partnership with community members. It uses a model of community health empowerment that encourages individuals to be advocates for their own health. Further, it provides tailored health messages for Black men that recognize the role of culture, masculinity, race, health disparities, and social determinants of health in their community. The original program was formally evaluated and found to be effective at improving attitudes and self-efficacy around specific HIV-prevention activities, and it was associated with lower reported risky sexual behaviors and feelings of greater community empowerment from baseline to follow-up.36 The model continues to be used by AAIUH with other diseases. Most recently, the barbershop model has been used during the Covid-19 pandemic to discuss risk-mitigation behaviors and vaccines and to distribute personal protective equipment.

Make the Road New York.

Make the Road New York, of which one of us (Rebecca Telzak) is the deputy director, offers programs aimed at improving health and well-being and increasing access to affordable health care and public benefits for immigrant New Yorkers. Here we discuss two such programs, the Health Promotore and Community Health Workers programs. The Health Promotore project was developed based on feedback from community members who told MRNY that they trusted information from their neighbors but were hesitant to walk into a government office to apply for public benefits. To encourage linkages to health and social services, the program uses peer health educators (promotores) who provide benefits consultations using screening tools and who refer clients to MRNY’s in-house advocates for direct enrollment assistance. Promotores also conduct health promotion and outreach such as giving nutrition advice or advising on chronic disease management. The promotores are members of the communities MRNY serves. They speak the same language and are culturally competent to provide one-on-one assistance to individuals in person. MRNY has hired and trained its own participants to serve as health promotores with great success. Some promotores have risen through the ranks to become supervisors. This community-based approach enables MRNY to reach the most marginalized immigrants, whom government agencies and mainstream providers often can’t reach due to lack of trust. Clients often learn for the first time from promotores that they or their children are eligible for emergency Medicaid or food stamps. And because the promotores interact with hundreds of community members every day and are trusted with sensitive information, they are able to quickly identify new needs as they arise. For instance, in 2019, many immigrants had concerns related to the public charge rule, which was much in the news and describes how the U.S. Citizenship and Immigration Services considers the use of, or likelihood of using, public benefits in evaluating a noncitizen’s immigration application for admission or for an extension or change of status.37 MRNY was inundated with calls from immigrants needing accurate information about how a rule change could impact their immigration status. MRNY was able to respond to these requests and to reach thousands of additional immigrant New Yorkers via robocalls, mass texts, and other means, ensuring that these individuals had accurate information to make decisions about their benefits.

MRNY’s Community Health Workers program includes community members trained to support families in managing and improving their health. MRNY also hosts a training program for immigrants to become CHWs and connects them to internships in medical facilities and CBOs. Several have stayed on staff as CHWs at MRNY. The program partners with hospitals, such as those in the public hospital system, federally qualified health centers, and other providers, who often refer clients who need support in managing their health conditions. MRNY-staffed CHWs meet patients at partner hospitals and clinics and also conduct both virtual visits and in-person home visits. The CHWs provide culturally competent health support in the patients’ primary language, building trust and reaching families who are not comfortable in conventional medical settings or have difficulty accessing quality care. They work with families to manage health problems, teaching parents to administer medicine, for example, and help people schedule doctor appointments. CHWs ensure that people with asthma are getting needed care, provide counseling on Covid, and make sure that people are able to get prescriptions and speak with providers as necessary. They are also trained to identify other MRNY specialists for referrals. The CHWs’ shared lived experience and continual engagement with clients builds and reinforces trust throughout their relationships.

India Home.

India Home, for which one of us (Shaaranya Pillai) serves as the deputy director, addresses the needs of and empowers the South Asian and Indo-Caribbean senior immigrant communities in New York City through culturally competent services. It was established by a group of pioneering South Asian health care providers who experienced challenges with caring for their elderly parents. These challenges included difficulty finding appropriate caregivers, the absence of culturally appropriate senior centers, and isolation that many elderly people experience. The lack of culturally appropriate senior centers led to the creation of the first professionally staffed, CBO in the United States solely dedicated to serving South Asian seniors. India Home’s programs include congregate meal service (including halal and vegetarian foods), health and wellness programming, recreational activities, case management, and mental health services. India Home has five locations in Queens, New York, including houses of worship, community centers, and the organization’s administrative location. Based on findings from a needs assessment that identified houses of worship as primary locations for South Asian seniors’ socialization and congregation and that identified faith leaders as trusted messengers, India Home developed partnerships with various religious centers. These partnerships with houses of worship and community centers have facilitated outreach to diverse communities within New York City’s South Asian populations, building trust with community members and providing regular touch points to hear community concerns.

These venues and programs are critical support services for clients—many of whom are recent immigrants and have limited English proficiency. Common health barriers among clients include inaccessibility of health resources due to language differences, low health-literacy levels, and transportation challenges. India Home addresses these barriers by assisting clients with health care enrollment, benefits and entitlement checks, and respite or home care services. India Home is actively involved in public health education efforts. During the early stages of the Covid-19 pandemic, for instance, the organization provided information about infection-prevention measures and resources and worked to dispel misconceptions about Covid-19 vaccination. They also have a case management department that has a strong referral network of providers in the area with the language competencies to provide accessible care to South Asian seniors.

For clients’ needs beyond these services, India Home partners with other CBOs who provide critical services to South Asians and coordinates with them concerning additional client support. These CBOs include the South Asian Council for Social Services (a senior support group), the South Asian Bar Association of New York (which provides legal education), JASA (which provides social service education and referrals), Sakhi for South Asian Women (which provides elder-abuse and domestic-violence workshops), and Turning Point for Muslim Women (which provides referrals for services that address elder abuse). The range of health services and support offered at India Home, along with its coordination with other South Asian CBOs, has contributed to strong relationships with community leaders and members who view India Home and its staff as trusted sources of information, support, and culturally tailored programs.

Lessons in Building Trust

Engaging community members as messengers.

As these case studies demonstrate, to build trust and deliver health messaging, CBOs rely on shared identities and experiences of living in, working in, and caring about the same community. And, like the BTWB barbers, many of the people who work or volunteer for CBOs that aim to promote health are not health professionals. The CBOs invest in educating and training community members to deliver and support health messaging. Having health counseling and support services provided by people who are themselves part of a given community is a foundational building block for establishing trust within that community. Building partnerships with the community. Across all three cases, CBOs formed partnerships with community members, leaders, and other organizations to achieve their program goals. Partnerships included medical institutions or health care providers. For clients who already trust medical institutions, this association can be important for enhancing trust in health messaging. And for those who do not trust institutions, having CBOs endorse institutions and providers can build trust in the institutions. The partnerships provide a linkage for program participants to act on the health messaging they receive and to seek medical care. Additionally, partnerships are made outside the health care system to reach their targeted populations, as seen in AAIUH’s collaboration with local businesses with ties to the community. Linkages are also provided to formal gathering places and social services, as with India Home’s relationships with houses of worship and community centers. These social, cultural, and religious networks are critical sources of support in communities, especially for recent immigrants, and establishing partnerships with them has been integral to reaching and building relationships with community members.

Cultural competence.

Cultural competence is essential for the work of trusted messengers. Even within communities, there is a diversity of cultures and experiences. Having the ability to understand, appreciate, and communicate with people from diverse backgrounds is important for building trust in health interactions. This is a key characteristic of the trusted messengers within the organizations in our case studies. Moreover, adapting health messaging and programming to the needs of specific communities signals respect for cultures, which can build greater trust and lead to better outcomes in health and well-being. Each of the programs we discuss above tailors its approaches to the population it works with, whether Latine, South Asian, or Indo-Caribbean immigrants or Black and African American men. The responsiveness and adaptability of a culturally competent approach can help community members to feel heard and respected and can enhance trust in the health information being disseminated by CBOs.

Intersectionality.

Along with cultural competence, an understanding of intersectionality is vital to addressing the needs of specific individuals and communities. The concept of intersectionality concerns the intersecting of different social identities (such as gender, race or ethnicity, and faith) in relation to overlapping systems of oppression (such as sexism, racism, and xenophobia).³⁸ Acknowledging how an individual’s various identities intersect with respect to privilege and oppression is important. For example, one’s race, gender, religion, socioeconomic status, and other characteristics are all factors creating nuanced, unique health experiences. Within all these case study examples, the members of the given community share at least one aspect of their identity with each other, yet the communities are each heterogenous. As trusted messengers, the CBOs use their knowledge and empathy to work with diverse clients. Many also provide services to address needs that their community members have outside the realm of health. CBO staff members work to ensure that these multiple overlapping social identities are reflected in the organizations’ programming so that a range of client needs are met.

Advocacy.

Lastly, all three of these CBOs participate in forms of community advocacy. MRNY builds capacity for civic engagement and grassroots organizing within communities, mobilizing immigrant, Latine, and African American individuals, and engaging them in nonpartisan organizing to address the systemic issues people identify in their communities. AAIUH evaluates government policies and practices on the health of local citizens and explores ways to more effectively deliver health care service. India Home helps develop the leadership capacity of seniors by enabling them to advocate for themselves with elected government officials. India Home’s leadership regularly meets with important policy-makers such as the New York State Comptroller, the Queens borough president, and New York City council members to ensure that government leaders understand the unique needs of immigrant seniors and enact policies and programs that address issues such as lack of proper translation services, the paucity of adequate transportation, and affordable housing. By advocating for communities with elected leaders, CBOs demonstrate their commitment to supporting community members.

Steps toward Greater Trust in Health Care Systems

Mistrust in the health care system is a growing and complex problem with roots in individuals’ and communities’ historical and contemporary encounters with the government and medical institutions and health care providers. Leveraging CBOs, which are often trusted and respected within their communities, to conduct health communications and outreach is one pathway to addressing mistrust in health care. Our case studies illustrate the important role that CBOs can serve as trusted messengers between health care institutions, providers, and community members. They showcase how these CBOs design their programs to build and leverage trust through their workforce, services, and engagement with the community. But the responsibility for trust building certainly does not rest with CBOs alone. Health care systems and providers have important roles in establishing and maintaining trusting relationships with CBOs and communities; without genuine efforts by institutions and providers to be trustworthy, CBOs can do only so much to promote the health and well-being of the communities they serve. In these challenging times, CBOs can use their strategies to ensure that health information is disseminated to marginalized groups and, potentially, earn trust among those who have lost faith in our health care systems.