Barriers and Facilitators to Trust in the COVID-19 New York City Test and Trace Program

Introduction

Trust and trustworthiness are critical factors for engaging communities in public health response activities. High trust in authorities at the forefront of health emergencies is associated with a greater willingness to comply with recommended protocols, including greater adoption of health protection behaviors, vaccinations, and message acceptance [1]. The importance of trust during health emergencies was evident during the COVID-19 pandemic, as many factors contributed to confusion regarding accurate public health communications, including limited information on a novel virus, frequent changes in prevention and treatment messaging, and an infodemic of misinformation [2]. To inform future public health emergency efforts, it is important to understand how trust played a role in influencing public responses to COVID-19 pandemic efforts.

Trust in the context of public health responses is a complex concept. Trust arises in situations of uncertainty and interdependence when one party must rely on or be willing to allow a trustor to act on their behalf [3]. Trust can be directed towards institutions or individuals. It can be defined as having characteristics of being honest, reliable, competent, having good communication, and maintaining confidentiality [4]. Institutional trust is often based on the perceived credibility of an organization shaped by historical performance and the media [3, 5]. In contrast, interpersonal trust is more intimate. It is grounded in personal connections and shared experiences and hinges on the interactions, communication, and consistency within specific relationships [5]. Moreover, trust in public health response contexts may differ across individuals and communities. Demographic characteristics such as age, race/ethnicity, and education contribute to differences in levels of trust [6]. Racial and ethnic minority groups and other disadvantaged populations often have less trust in health systems[7, 8].

Previous literature highlights a number of factors that influence trust in the context of public health emergencies. Information sources including medical professionals, community members, friends, family and scientists are more trusted than politicians and government officials [1]. Regarding media, traditional media is more trusted than social media [1]. For these reasons, trusted messengers such as organizations and individuals embedded within communities are often called upon to disseminate health messaging [9, 10]. Trust fluctuates over the course of an emergency due to authorities’ responses, communication, transparency, and the changing nature of the event. Individual determinants affecting trust in emergencies include life contexts, past experiences, knowledge, political ideology and values [1]. Additional factors have come to light as being influential during the COVID-19 pandemic. The politicization of science and rhetoric from political leaders sharing misleading and false information undermined public health agencies and the trustworthiness of COVID-related topics [11]. However, expert sources, such as governmental agencies, have the potential to correct misinformation [12]. In regions of the United States, trust influenced perceived credibility in public health systems, public health messaging, COVID-19 testing, and willingness to participate in contact tracing [13, 14].

As New York City (NYC) became the first US epicenter of the COVID-19 pandemic, it was crucial to engage the public to adhere to COVID-19 guidelines to limit the transmission of the virus and protect an already overburdened health system[15]. In response, NYC launched one of the country’s largest contact tracing programs. With the success of such programs being dependent upon gaining trust among a critical mass, it is important to evaluate key strategies used to develop trust in public health programs, particularly among diverse populations like those in NYC. To our knowledge, no other studies have specifically examined the role of trust in the implementation of a local COVID-19 contact tracing program. As part of a larger, mixed-methods external evaluation conducted by our research team at New York University (NYU) Grossman School of Medicine, the goal of this study was to identify facilitators and barriers related to public trust in the NYC Test & Trace (T2) program and strategies for enhancing trustworthiness [16].

Intervention

NYC was the first U.S. epicenter of SARS-CoV-2 transmission, with more than 30,000 cases identified by March 29, 2020 [17]. On June 1, 2020, NYC Health + Hospitals (H + H, NYC’s public hospital system), in partnership with the NYC Department of Health and Mental Hygiene (DOHMH), other city agencies, and a large network of community partners, launched the NYC T2 COVID-19 contact tracing program [18]. T2 had three key objectives: to identify and isolate cases (termed the “Test” pillar); to reduce transmission through contact tracing (“Trace”); and to provide resources to residents in need of support during their isolation or quarantine periods (“Take Care”).

Methods

Key Informant interviews

Researchers reviewed T2 program documents and used the Consolidated Framework for Implementation Research (CFIR) constructs to guide development of the interview guides [19]. Interview questions addressed the T2 program structure, implementation process, and participants’ experiences with the program. The guide included questions asking directly about the role of trust in T2 implementation (See Appendices). In total, N = 74 semi-structured interviews were conducted with H + H leadership, DOHMH program leaders, frontline staff, community-based organization (CBO) leaders, outreach staff, and cases and contacts between January and September 2022 (Table 1).

Table 1.

Interview participants by role category

Role relative to the Test and Trace Programa	Number of participants interviewed
CBO Leadership	15
City Hall Leadership	5
DOHMH Leadership	16
H + H Leadership	17
H + H Staff Member (Contact Tracer, Supervisor, etc.)	17
Case Patient	4
Contact Patient	4
Total participants among 74 interviewsb	77

^a One participant held roles in multiple categories

^b Several participants were jointly interviewed

T2 leadership interviewees were selected based on a review of the T2 organizational chart and recommendations from interviewees. Interviews were conducted until we reached saturation and a strong understanding of the program.

CBO representatives were selected from 77 partners provided by H + H staff and the T2 website. The evaluation’s Community Advisory Board (CAB) provided feedback on organizations; those that received two or more recommendations were selected for interviews. We selected additional CBOs to ensure diverse representation based on their geographic and demographic catchments.

Cases and contacts interviewees were recruited from 750 cases and 426 contacts—individuals contacted by T2 due to COVID-19 infection or exposure, respectively—provided by H + H. Potential interviewees were contacted and interviews were scheduled on a first-come, first-served basis.

This study was approved by the NYU Grossman School of Medicine Institutional Review Board.

Analysis

Interviews were audio-recorded, transcribed, and analyzed using qualitative rapid analysis to identify themes associated with trust in the T2 program [20]. The research team shared regular updates, review summaries, and report drafts with H + H and discussed preliminary findings during bi-weekly meetings. We then used CFIR as a framework to guide the identification of facilitators and barriers to public trust at the institutional and inter-personal levels across the T2 programmatic components of outreach, testing, and contact tracing.

Results

Several themes were identified as facilitators and barriers to trust and trustworthiness of the T2 program. Table 2 includes themes by CFIR constructs.

Table 2.

Summary of facilitators and barriers to trust themes using the CFIR framework

Facilitators to Trust

T2 program: Leading and participating organizations

Leveraging established reputations of the leading organizations

Integrating existing community organizations to leverage their track records in their respective communities

T2 program: Adaptability

Culturally and linguistically adapting materials to work with diverse populations

Adapting testing services and resources based on community needs and at no cost

Outer setting: Partnerships and connections

Networking with external organizations and individuals to expand reach and leverage trust

Working with trusted information sources such as local and culturally-specific media outlets to conduct outreach

T2 Program Staff

Hiring frontline staff with shared identities–racial, ethnic, linguistic, and/or geographical concordance

Hiring frontline staff with good communication skillsets including being active, empathetic, honest and transparent

Barriers to Trust

Outer Setting: Local Attitudes and Conditions

Sentiment of mistrust in government due to historical and recent experiences

Lack of trust in the medical and scientific establishment

Inconsistent and contradictory COVID-19 messaging from government and public health officials

Rampant misinformation on the COVID-19 virus, testing, and vaccines

T2 Program Participants

Public’s lack of awareness of the program and its goals

Privacy concerns regarding information provided during contact tracing

Outer Setting: Policies and Laws

T2 program policies regarding patient privacy hindered trust in contact tracing calls

Facilitators to trust in the T2 program

T2 program: Leading and Participating Organizations

A key facilitator to trust was leveraging the reputations of the organizations that developed and implemented the T2 program. Participants reported that H + H—T2’s lead organization—was a trusted health care provider in the city. As a public hospital system, H + H provides services to all regardless of immigration status or ability to pay. As such, H + H’s strong reputation among immigrants and those living in high-risk areas, as reported by multiple participants, facilitated public trust in the T2 program.

“people do trust Health and Hospitals, especially undocumented immigrant communities, just because they know that is the only place they are able to go get care and they have been doing that for years” – CBO leader

Similarly, T2’s integration of local community organizations into the program leveraged CBOs’ long-standing track records within their communities. CBO leaders discussed being well-recognized for providing social services and, as one stated, “deeply rooted” in their communities and “accountable” to their membership. T2 included a CAB of CBO representatives from across the city to solicit feedback on programmatic elements related to community engagement. Additionally, T2 contracted directly with community-based organizations to conduct education and outreach, which included activities such as distributing personal protective equipment and hand sanitizer, leafletting, door knocking and texting campaigns, phone banking, tele-town halls, and virtual and in-person community education activities and events. And as one T2 leader reported, partnerships were critical in COVID-19 testing where turnouts for testing events were limited until CBOs actively endorsed them.

“They realized that without the community organizations they weren’t going to get anywhere because they saw that COVID was rampant, and they weren’t getting through to the community members who were really suspicious and wanted to hear from people they trusted or organizations they trusted.” – CBO leader

T2 Program: Adaptability

The T2 program adapting to the needs of community members also facilitated trust in the program. This involved ensuring T2 services and outreach were culturally responsive to and spoke the language of local communities. Outreach efforts and materials were tailored and culturally- and linguistically-adapted, as reported by funded CBOs who were experienced in working with these diverse populations.

“One of the things that was very crucial, at least within the Chinese community is the fact that they don't trust anyone who don't speak their dialect or their language. And that's true to any ethnicity.” – CBO leader

Another adaptation involved modifying testing services and resources based on community need and at no cost. Testing services included mobile vans deployed to high priority areas as needed including settings where positive rates were high or large public housing developments that were far from testing sites. A third example includes the Take Care program developing resources for individuals isolating and quarantining based on participant feedback.

“I always think trust is built first and foremost by providing what people need and showing up where people need it. […] we had free testing in as many places that we could get free testing for almost two years now, 18 months now. To a certain extent, I’m confident that I can walk into a neighborhood testing site, be greeted by friendly people, get a test, and get my results in 24-48 hours.” – H+H leadership

Outer Setting: Partnerships and Connections

The T2 program partnered with networks of external organizations and individuals to expand the reach of and trust in the program. The CBOs funded by T2, worked in their own geographic catchment areas. However, as needs varied in communities outside of their service areas, T2’s CBOs partnered with non-funded CBOs within local neighborhoods to conduct outreach and education and enhance trust in their services. NYC’s DOHMH was key to managing relationships with the program’s CBOs and CAB, many of whom had previous working relationships with the department leveraging histories of trust. T2 also had an internal team—the Test and Trace Campaign—tasked with supporting community outreach that worked to develop relationships with external organizations. The Campaign partnered with local unfunded organizations during community events. Multiple interviewees reported that hosting joint events with external organizations improved uptake of services and outreach. Additionally, when the program noticed low uptake in specific groups, it identified new organizations who worked with those groups. As an example, one interviewee described low testing rates among Bengali women led to a partnership with a local women’s organization that served this population.

“They [community members] have a huge trust in [external CBO]. Whenever we table at that community organization, we have so many people coming out to get the PPEs, to get their vaccines, and to get tested. So, when we speak to them, they will tell us because we have been working with [external CBO] for the past 5 to 10 years. They would not prosecute us, so to speak, because as some of them are immigrants, undocumented immigrants, they could be afraid to go to specific areas thinking that when they get their information, they will call immigration on them.” – CBO leader

Additionally, working with trusted information sources like local and culturally-specific media outlets was key to conducting targeted outreach. H + H engaged in paid and earned media to promote services. Multiple leaders reported community members’ preferences for and trust in certain media. Thus, the program worked with local newspapers and ethnic- and language-specific radio stations to communicate COVID-19 information and resources. Many interviewees discussed disseminating information on social media channels to reach specific demographic groups, including Discord/TikTok for youth and WeChat for Chinese-American communities.

“[Our CBO] already partners with Sunuafrik Radio and that is a locally founded, I would say African radio that is covered and there’s different shows that occur in different African languages. We took it upon ourselves that one way we could communicate our information is through this radio because most of our community members and our community targets do listen to this radio station. So, I myself have done […] I guess we ended up calling them skits, but they were really just information and kind of FAQs about Covid testing and then Covid vaccination.[…]that was able to reach our target audience even better.” – CBO leader

T2 Program Staff

Characteristics of the T2 frontline staff proved to be key facilitators to trust in the program. This included having shared identities between the frontline staff and community members which included racial, ethnic, linguistic, and geographic concordance. H + H leaders and CBOs achieved this by hiring contact tracing and outreach staff from local communities who represented New Yorkers' nuanced demographics.

“47 percent of our population speaks Spanish. So, we made sure that not only did we have Spanish speaking staff, that we had Puerto Rican, we had Dominican, we covered South American dialects because we knew that even mattered to community members.” – CBO leader

Multiple T2 staff leveraged these shared identities in order to gain trust during outreach and contact tracing conversations with community members.

“I've found the most successful, is that explaining that I was not a call center, but a fellow New Yorker, that I was suffering alongside them. […] They said, ‘Oh, you're a New Yorker, where are you located?’ It just kind of helped bridge the gap often enough. And once you engage people into a conversation, they feel tethered to you, you don't want to be rude anymore. They don't want to be dismissive and angry. It's not people's natural way. So, you just flip it so that they're partners with you, which is ultimately what the program goal is, right? Where we support New Yorkers, we're your partners.” – T2 Case Investigator

Additionally, staff's communication skillsets emerged as influential to gaining trust. Interviewees cited staff who previously worked in client/people-facing jobs—e.g., customer service, sales, or actors—and those with natural people skills were more successful at gaining trust during outreach and contact tracing.

“[When recruiting new staff] You also have to look at people that are unemployed and see what skillsets they have. We had a theater worker that was one of our best canvassers, she was creative, she was funny.” – CBO leader

Several T2 staff reported using active and empathetic listening communication techniques to put people at ease during contact tracing phone calls.

“I kept going back to the script and trying to train myself, and honestly, once I would get on the phone, I would just let people talk. And a lot of times, that was just what they needed, someone to listen. They were scared, they were confused about if they were gonna get sicker, if they had to go to the hospital. So, most of the times, it was more of a venting situation, until I could get to the point where I would ask them about their contacts, and then, offer them resources.”- T2 Case Investigator

One CBO leader emphasized being honest and transparent with community members in interactions and validating the uncertainty and changing nature of the pandemic.

“Community only trusts you when you’re consistent when you do what you’re going to do. And we were honest, when people said, ‘Well, it looks like this is forever changing’ everything that people complained about we said, ‘You’re correct.’ Cause this is new, and when things are new, we didn’t say we were the experts, we said, ‘We’re learning every day.’” – CBO leader

Barriers to trust in the T2 program

Outer Setting: Local Attitudes and Conditions

Local attitudes and the socio-political climate presented barriers to the implementation of the T2 program. Among these was a sentiment of mistrust in government due to historical and recent experiences with or knowledge of inequitable treatment by government representatives. This was reported primarily among immigrant, religious and Black communities. For example, one CBO leader who worked in immigrant communities reported:

“Immigrant communities, rightly so, have a distrust of government because that's rooted in a history, like so many reasons why. They're left out of so many other benefits and programs, and scared of getting, of information being shared, scared of deportation, so lots of fears come up when immigrants thinking about their interaction with government.” – CBO leader

Others reported lack of trust in the medical and scientific establishment due to histories of exploitation in research and clinical trials.

Inconsistent and contradictory COVID-19 messaging from government and public health officials at various levels during the initial phase of the pandemic contributed to confusion among community members. This included guidance on when to go to the hospital and when to wear masks. Interviewees reported these contradictions in early communications may have affected subsequent trust in COVID-19 pandemic response efforts.

“The problem is we know that with COVID the messaging was ‘Don’t come to the hospitals.’ Remember?... Yeah, it’s a contradiction. Because I’ve been telling you for 20 years or whatever age you are go to the hospital if you need something[…] then you say, ‘Don’t come to the hospital.’” – CBO leader

Further, rampant misinformation on the COVID-19 virus, testing, and vaccines played a role in fueling a climate of skepticism. One H + H leader felt initial misinformation and distrust led to lower usage of services. CBO leaders noted combatting misinformation during outreach was a challenge throughout the pandemic. This included misinformation on COVID-19 transmission routes and treatments and the purpose, safety, and effects of COVID-19 vaccines.

“At the beginning, and throughout the whole COVID crisis, there was so much misinformation out there going out there that if you look at me, you'll catch COVID, if you stand next to me for under this amount of time you’ll catch COVID. Oh, drinking that ridiculous stuff, or drinking this concoction could cure your COVID and stuff like that. So, that was something that we, as the work that we did, working with the community was essential to do. And we took it upon ourselves as a CBO to displace those rumors.” - CBO leader

T2 Program Participants

The public’s lack of awareness of the program and its goals contributed to less trust and lower engagement in services. Staff involved with contact tracing specifically noted a lack of knowledge among people being contacted. Infected individuals didn’t understand the case notification and contact tracing procedures. Examples included not knowing how the program identified cases and how personal information was going to be used. Others felt it was invasive or thought there were ulterior motives to the program. Contact tracers’ efforts to explain the program did not always lead to greater engagement in the calls.

“Older people are very wary as well, because they always think it's a scam. And I used to feel really bad for that, because I have to really convince them that – They’d be like, ‘How you got my number and who said I had Covid,’ and it would be a whole pull and tug because they don't play. The older people do not play. . . . Miscommunication was a big deal and people feeling like the government was trying to get into their business, that was a big hinder, too.” – T2 Community Engagement Specialist

Privacy concerns posed a challenge to the T2 program’s contact tracing efforts. Among cases and contacts who cooperated with contact tracing calls, most provided information about their own illness or circumstance. However, the main challenge for contact tracers was eliciting information about contacts, as cases would express concern about giving out family/friends personal information to contact tracers.

“Some people were more than willing to provide contacts. Other people were a little reluctant to provide contacts. They found it an invasion of their privacy, no matter how much you told them it was confidential and, ‘We will never share your information.’ People were reluctant and found it a little invasive.”– T2 Case Investigator

Outer Setting: Policies and Laws

T2 program policies regarding patient privacy led to challenges that hindered trust in contact tracing calls. T2 staff could not identify themselves as contact tracers before confirming a case/contact’s personal information which was a primary barrier to gaining initial trust.

“People did not trust the nature of the call. And so they avoided speaking to us and became very angry, because the first thing you have to do is identify their birth date. And that's a pretty critical piece of information. So, we lost a lot of people right at that juncture.” – T2 Case Investigator

Discussion

Our findings highlight several key characteristics and actions of the organizations and individuals implementing the program that facilitated trust. This included having trusted organizations lead and deliver program services, as well as hiring or using frontline staff with similar demographics and shared identities as the communities being served. Additionally, culturally and linguistically adapting program services to meet the needs of community members, and being responsive to requests for services appear to have enhanced trust. Communication competencies also played a key role in enhancing trust. These included delivering information via trusted local and culturally responsive media outlets. Among frontline staff, having strong communication skills and being empathetic and straightforward worked to put community members at ease. In contrast, most barriers to trust were factors outside the T2 program including inconsistent pandemic messaging from the federal government, histories of mistreatment in healthcare and research settings, and COVID-19 misinformation circulating in communities. Lastly, a general lack of awareness of the T2 program and its goals was a barrier in contact tracing efforts.

Our study builds on findings from extant literature on trust in health and disaster preparedness and extends the literature on trust during the COVID-19 pandemic. Our findings corroborated the importance of using trusted organizations as influential to trust in emergencies [1, 3]. Other research on COVID-19 contact tracing has identified a need for greater public education and noted similar barriers such as fears of scams and privacy [21, 22]. Past research highlights that proficiencies in communications are influential to trust [1, 23]. Our study adds to the COVID-19 literature highlighting communication strategies that can be used by frontline staff to gain trust including tapping into shared identities of living in the same city and prioritizing honest communications.

Our findings add to the literature on trust during the COVID-19 pandemic in diverse urban settings and the importance of tailoring programs to reflect the needs of diverse communities. For example, we found that histories of maltreatment in medicine and science affected trust among various population subgroups, reflecting how divergent cultural experiences influence patterns of trust in health settings [24]. Examples of tailoring programs highlighted in this paper included engaging diverse partner organizations and staff, ensuring services and outreach are culturally tailored, and ensuring this representation is hyperlocal to neighborhoods and covers the breadth of ethnic and linguistic diversity. Table 3 includes program recommendations.

Table 3.

Recommendations for enhancing trust in public health responses

Key Recommendations
• Build and sustain relationships with organizations working in communities to ensure that trusted networks are established and readily available well in advance of future crises Engaging local community-based organizations, hiring culturally responsive frontline staff, and engaging localized media enhanced trust in the T2 program.
• Conduct early media campaigns targeting communities where distrust may be more entrenched to educate the public about program purposes and the use of the resulting information Participants reported that a lack of knowledge of the program and use of information collected were barriers to program participation. Other jurisdictions have introduced legislation that emphasizes voluntariness, privacy, and confidentiality of the practices.
• Build capacity to actively document and address misinformation through education campaigns, stay at the forefront of communications, and dispel myths before they become established COVID-19 misinformation also served as a barrier to trust in the program, one recommendation is to create educational campaigns to dispel misinformation and disseminate through trusted messengers and diverse media channels. Additionally, document misinformation and create talking points and materials for trusted messengers to use in communications and outreach.

This evaluation has several limitations. Our findings are limited to New York City and may not be generalizable to other locations and populations. Interviewees consisted of a convenience sample, and there may have been topics that interviewees chose not to discuss due to their sensitivity.

This study illuminates critical insights into the role of trust in the implementation of the T2 program during the COVID-19 pandemic. Through an analysis of facilitators and barriers, we identified several key strategies for building trust in public health programs that focus on engaging trusted institutions, individuals, and channels of communication and tailoring programs to community members that can be used in future pandemics. Conversely, barriers identified posed significant challenges underscoring the importance of clear, consistent communication and proactive efforts to combat misinformation and address issues of trust.