Proceedings of a Workshop—in Brief

The Roles of Trust and Health Literacy in Achieving Health Equity: Community Settings

Proceedings of a Workshop—in Brief

INTRODUCTION

On October 6, 2022, the National Academies of Sciences, Engineering, and Medicine’s Roundtable on Health Literacy hosted the third of three public workshops in a series titled “The Roles of Trust and Health Literacy in Achieving Health Equity.” The first workshop in the series explored how using health literacy best practices might affect trust in clinical settings and how that might positively affect health equity. The second workshop focused on how health literacy best practices might affect trust in public health institutions at the state, local, tribal, and federal levels. The third and final workshop addressed similar themes in the context of community-based organizations.¹ The workshop featured four short presentations followed by a discussion among the four speakers and the workshop moderator.

Michael Wolf, planning committee member and associate vice chair for research, the James R. Webster, Jr., professor of medicine, director of the Institute for Public Health and Medicine’s Center for Applied Health Research on Aging at Northwestern University’s Feinberg School of Medicine, and moderator for the day, opened the workshop. He noted that trust is central to promoting health. Trust, he said, is associated with greater patient engagement, better health outcomes, and increased participation in medical research; he expressed that having confidence in public health messaging is fundamental to having trust in the health care community.

Individuals and communities with marginalized identities have many reasons—historical and current—to mistrust health care institutions and their communications, said Wolf. In that respect, health equity is essential for building trust with those communities. “One point we will emphasize over and over in this session is that it is the responsibility of all health care entities—health systems, pharmacies, human services agencies, industry, and research entities—to become trustworthy, to listen to communities, and to invest in the honest work to garner trust,” said Wolf.

Wolf continued by presenting the definitions of personal and organizational health literacy, as defined by the

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Department of Health and Human Services’ (HHS’s) Healthy People 2030. Personal health literacy is “the degree to which individuals can find, understand, and use information and services to inform health-related decisions and actions for themselves or others.”² Organizational health literacy operates on a different level. In 2012, for the purpose of their work, the Roundtable on Health Literacy defined health-literate health care organizations as those that “make it easier for people to navigate, understand, and use information and services to take care of their health” (Brach et al., 2012). The latter definition, said Wolf, underscores the notion that it is the responsibility of health care organizations and the companies that release related products and services to communicate in an understandable and actionable manner with the hope of building trust with those they serve. As context for the ensuing presentations and discussions, Wolf noted that speakers in the two previous workshops in this series pointed out repeatedly the importance of genuine community engagement as a necessary step for creating and iteratively improving health literate strategies and for improving trust. Additional strategies identified by individual presenters in this workshop are included at the end in Box 1.

CONNECTING COMMUNITIES FOR THE COMMON GOOD

Silas Buchanan, founding chief executive officer of the Institute for eHealth Equity, said that his organization is concerned that technology will exacerbate health disparities.³ To address this concern, he and his colleagues spend a great deal of time working with underserved communities and communities of color to raise their literacy around adopting and using technology to improve health outcomes for individuals, families, and communities. At the same time, they work with the “ideators and innovators” of electronic health technology solutions to ensure that they develop and roll out their technologies with cultural appropriateness and inclusion in mind.

Trust is hard-earned yet easily lost, said Buchanan, and those words are particularly true regarding the trust paradigm between underserved individuals and health care providers, researchers, health literacy experts, and health care institutions in general. Trust, or lack thereof, influences a community member’s willingness to get routine care, preventive screenings, and crucial medical or mental health care (Read et al., 2021). In this current era of what Buchanan calls “health equity tourism,” too many experts drop into communities, have a quick conversation about health literacy and health equity, and then they are gone. This approach, he said, misses opportunities to build trust in diverse communities. The job starts with improving health literacy on both sides, at the community level and the health care stakeholder level.

Often, said Buchanan, the burden to be health literate falls on all patients but disproportionately on underserved patients. While improving health literacy among community members is essential to achieving health equity, so too is improving cultural competence and cultural humility among health care stakeholders—the hospitals, payers, providers, and public health professionals. It is important that these stakeholders be as literate about underserved patients as the patients are expected to be about the health care system and about their conditions or illnesses.

Though it is commonly thought that mistrust of health care comes mostly from historical atrocities, Buchanan says that idea ignores the everyday racism that often begins at the front door of the nation’s health care institutions. As an example, he noted that the pictures of past and present leadership that hang in the lobby of many health care institutions are a frank reminder that the leadership does not usually include someone of color or even from the communities that surround the institution. This can be intimidating or perceived as less than welcoming to some community members. Echoing Read et al. (2021), Buchanan says that it is imperative that health care organizations first seek to better understand the experiences that lead some community members to lose trust, and in doing so, figure out what they need to do to “re-earn the trust of those individuals

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and how to prevent those events from happening again.” The way to do that, he added, is to make all communications clear, concise, consistent, culturally appropriate, and linguistically accurate, and to involve the community in planning any activity directed at the community.

Buchanan’s organization is on a mission to help by building geographically expandable, culturally appropriate, web-based, and collaborative ecosystems designed for leaders of faith-based and community-based organizations that are loved and trusted by community members. These organizations are embedded in underserved communities and communities of color, and these ecosystems are intended to support their work and help them lead conversations that help bridge the communication gap between communities of color and health care organizations. This gap, which Buchanan said is more like a chasm, is where the lack of trust and health literacy exists.

Aside from improving health literacy, Buchanan wants this effort to also improve technological literacy in underserved communities and communities of color. “We want to make sure that we understand where people are at with technology and how adept they are at receiving or sharing information about their health and using technology to do it,” he explained. To accomplish this, Buchanan and his team recently piloted Text4Wellness,⁴ a two-way, real-time, text messaging campaign that leverages relationships with faith- and community-based organizations to deliver culturally relevant, actionable text messages to members of underserved communities and communities of color. This program’s goals include:

• “Demonstrating the potential of mobile health technology to address critical national health priorities”⁵ of reducing health disparities, lowering costs, and improving trust in health care.
• “Demonstrating the potential of mobile health technology” to consistently outreach and engage “underserved populations with critical health information.”
• Developing “a base of evidence on the efficacy of mobile health interventions” with targeted populations.
• Generating novel models for public-private partnerships that leverage mobile health technology to reach and engage targeted populations.
• Educating, motivating, activating, and empowering targeted communities to make healthy choices.
• Improving health literacy.

Implementing Text4Wellness occurred in four phases. First, Buchanan’s team conducted training for health ministers at five faith-based organizations who would drive the program. Next, the health ministers helped co-create collateral materials for participating churches, a reflection of the program’s “for us, by us” approach. These materials included palm cards distributed in the pews and posters that the churches, as well as barbers, beauticians, nail salons, and corner stores in their communities, could post. Third, the implementation team established weekly health minister check-in calls that could provide technical assistance when needed. Finally, they monitored enrollment and feedback on the text messaging platform and shared the data in deidentified, aggregated form with the health ministers.

Once individuals enrolled in Text4Wellness, they were asked to provide demographic information and answer a short series of questions about their health behaviors, using a survey that Text4Wellness created. The participants then received a set of three weekly messages with information about healthy eating and active living. At the end of 6 months, 2,500 people had enrolled in Text4Wellness, with 72 percent answering all eight enrollment questions, a 43 percent response rate to the health behavior questions, and no opt-outs.

Buchanan’s organization is now rolling out its health ministry website and online learning center that will help faith-based organizations start or strengthen their

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health ministries, with each faith-based organization getting its own landing page. The website will also provide information to encourage healthy behaviors, such as healthy recipes, and help establish networks among the participating organizations. In addition, Buchanan’s team is creating social messaging that the participating organizations can deliver to their community members and congregants. Planned campaigns include efforts to address clinical trial research participation, maternal morbidity and mortality, uncontrolled hypertension, hereditary cancer detection, and mental health, which are topics that the participating communities have expressed interest in learning more about.

INTEGRATING A COMMUNITY-BASED ORGANIZATION AND HEALTH SYSTEM TO BUILD COMMUNITY TRUST

Joyce Cheng, executive director of the Chinese Community Health Resource Center, explained that her organization serves primarily Chinese-speaking immigrants through its location in San Francisco’s Chinatown, and it also works with other partner community organizations. The Center provides culturally and linguistically appropriate Chinese and English health education programs and services, including health classes, educational materials, and a website with over 250 health topics ranging from pediatrics to general health to geriatrics. It also offers online support groups, focus groups, a patient navigation program, and a variety of community outreach activities, such as health fairs, vaccination clinics, and COVID-19 testing.

In addition, Cheng’s organization serves as the community outreach unit for the community-owned Chinese Hospital health system. The organization conducts and participates in community engaged research that focuses on methods of delivering health information, including using health messengers, ethnic media and social media, and various technology platforms. Cheng’s organization applies this research focus to topics such as cultural stigma, cancer awareness and screening, pain management, childhood obesity, diabetes management and prevention, tobacco use, and increasing diversity in clinical trials.

As an example of building health literacy and trust, Cheng highlighted a grant her organization received from the National Institutes of Health that enabled it to work with faith-based partners in local Chinese and Vietnamese communities. This project, conducted with investigators at the University of California, San Francisco, addressed the cultural stigma associated with advance care directives that is common in Asian communities and sought to promote awareness and completion of advance care directives in the community (Sun et al., 2017). With input from faith-based partners and leaders, Cheng and her colleagues tailored their intervention with both culture and faith in mind. From the project’s beginning, the research team involved the pastors, faith-based leaders, and faith-based community members to get guidance on the study design and the intervention, which she said was an important first step toward building trust.

As a framework, the intervention used the theory of reasoned action as an integrative framework for predicting and changing human social behavior, explained Cheng (Fishbein and Ajzen, 2011). During the study’s development phase, the research team conducted interviews with church leaders and members to understand their awareness, beliefs, and knowledge related to advance directives (Sun et al., 2017). These interviews also explored some of the respectful ways for engaging with church members to increase their awareness about advance directives.

The intervention itself consisted of three sessions. The first session had the church’s faith-based leader, a physician who was also a church member, and a health educator discussing the pros and cons of having an advance directive (Sun et al., 2017). The second session provided step-by-step instructions on how to fill out an advance directive form and assistance in completing the advance directive. Based on input from the faith-based partners, the project team increased the time between the first and second sessions to 4 weeks to allow the participants to talk to family members, identify a health care proxy, and decide whether to complete an advance directive. The third session served as a final touchpoint

that enabled the participants to get answers to any remaining questions.

Cheng said that 174 people from four churches participated in the study, with 25 percent having conversed with their health care proxy and 71.8 percent completing an advance directive, both up from a baseline of zero. Culturally tailoring the intervention by working with the community and providing step-by-step guidance minimized the barriers to completing an advance directive. She noted that this study demonstrated the connection between trust and health literacy through the actions of the research team, the community and academic partners, and her organization, which has been a trusted entity in the community for over 30 years. Having these partners work together in a genuine way and inviting stakeholders to the table at the beginning of the project helped build trust, she added.

In closing, Cheng said, “There is a saying in the community that if I do not know what you are saying, the answer is no.” Getting to yes, she said, involved finding a respectful way to introduce the topic and finding messengers to deliver information appropriately. “Once you have that way of relaying information in very simple, plain language and your recipient understands it, then the communication is effective,” said Cheng.

COMMUNICATION RECEPTION FILTERS

Susan Scrimshaw, a medical anthropologist who is the former dean of the University of Illinois Chicago School of Public Health and former president of Russell Sage College, explained that she grew up as a bilingual U.S. citizen in Guatemala, and that her struggle with dual cultural identity gave her insights and experiences that helped her build trust in diverse communities. However, she emphasized that her experience is not the same as growing up as a Latina in the United States or as an immigrant from Latin America. Building trust, she said, depends heavily on cultural literacy, and promoting health literacy is embedded in cultural literacy. Cultural literacy, she added, goes beyond someone thinking they understand a community. Rather, it means admitting that a White person cannot go into a diverse community and say they know how to help them or that they want the community’s trust.

Listening to community members, said Scrimshaw, is the first step toward earning trust. For example, students and faculty at the University of California, Los Angeles (UCLA) wanted to work with elementary school children in South Central Los Angeles to have them develop health and nutrition messages to which they could relate. The first step was to ask community members about their needs and obtain permission to work in their community. Then the team began by asking what the community’s biggest concern was and supporting their priorities. They found that the community’s biggest concern was safety—things such as better lighting and the presence of public safety officers. Focusing on addressing safety concerns promoted trust between the project team and the community that later enabled them to work with the schools on health messages for children.

Scrimshaw said her personal lesson about trust came from a community member who headed the advisory board for a community participatory research project aimed at improving pregnancy outcomes in Los Angeles’s Black community. Scrimshaw built a team and all the faculty and students on the team were Black individuals, except for her, but there were still trust issues until the community advisory board leader discovered that she shared losing a pregnancy with Scrimshaw. That common bond—two mothers who did not want to see any other women have the same experience they had—was enough for the board leader to trust Scrimshaw and teach her about what academic liberals do wrong in her community. “Trust begins with understanding our common bonds and having the humility to accept what we do not know and what we have not experienced,” said Scrimshaw.

Another issue she has dealt with in her years of doing research is determining who among the many people who come forward claiming they represent the community actually represent the community. Addressing that issue requires being inclusive, which in the South Central Los Angeles project meant doubling

the number of community advisory board members chosen from the 40 participating organizations from 6 to 12 members. While only 12 of the organizations had representatives on the advisory board, Scrimshaw made a point of reporting and listening to all the participating organizations.

Scrimshaw underscored that it is important to accept that what people hear is not always what the message was intended to say. Rather, what people hear is filtered through their backgrounds and experiences, which she called communication reception filters (Scrimshaw, 2019). Communication filters include:

• “language
• gender
• age
• low literacy
• low internet and social media literacy
• economic status
• ethnicity and culture
• social class
• political ideology
• lived experiences
• blindness
• hearing difficulties” (Scrimshaw, 2019).

As an example, Scrimshaw noted that the word trauma exists and is spelled similarly in Spanish, French, and English. When she was doing a study on seizure disorders, physicians always thought about trauma as a physical event such as a blow to the head that caused a seizure. However, patients in Latino and Haitian communities are more likely to think of trauma as an emotional shock that causes a seizure. In her work with Mexican women in Baja California, she was trying to describe risk and pregnancy, but the direct translation for risk did not have meaning to the women. Rather, when she asked them how they would talk about all the things that worried them during pregnancy, they used the Spanish word that translates to danger.

Another communication filter is the different perspectives of a community or cultural insider and outsider. One can be an insider in one culture and an outsider in another, said Scrimshaw. For example, an insider view is that the Black community has not forgotten the history of abuse that Black individuals have suffered at the hands of the medical establishment. Given that, why should the community trust the outsider who cannot understand why they would not want to take the COVID-19 vaccine?

To conclude her remarks, Scrimshaw talked about the importance of being respectful to the community and its stakeholders. Listening is one sign of respect, she said. Another important concept is respecting the dignity and valuing the worth of every individual no matter their economic status, education, or job. “Every individual and every community deserves respect,” said Scrimshaw.

PATIENT- AND COMMUNITY-ENGAGED RESEARCH TO ADDRESS HEALTH EQUITY AND REDUCE HEALTH DISPARITIES

Joyce Balls-Berry, lead of the Health Disparities and Equity Core in the Knight Alzheimer Disease Research Center at Washington University in St. Louis, explained that part of her work toward addressing health equity and reducing health disparities in underserved communities is giving women a voice. Women, she said, are often underrepresented and rarely heard when it comes to thinking about their health. Her work also involves giving voice to communities that are underrepresented in science in a way that improves overall health.

For Balls-Berry, literacy is extremely important, as she lives with dyslexia that was not diagnosed until she was 8 years old. Having dyslexia, she said, creates a challenge with functional literacy, which is a person’s ability to read and write. Functional literacy can affect a person’s health and health literacy, how they navigate everyday life, and their opportunities to participate in health-related research. In thinking about the complexities of engaging different communities in community-based participatory research, Balls-Berry said it goes back to respecting the community, listening to how community partners want to engage, moving beyond talking about stakeholders to treating the community as collaborators

and partners, and being more transparent and sharing lessons back with the community.

One of her current projects involves collecting data on Alzheimer’s disease and related dementias from a community senior living facility in St. Louis. The goal is to build a research registry to engage more communities of color in Alzheimer’s disease research. Balls-Berry said that she did not want this project to be an example of helicopter research—go into a community, ask questions and collect data, and then leave without trying to discover what the community would want from a study or without informing the community about the results and lessons learned, let alone in a culturally appropriate manner. She noted that residents of the senior living facility asked her to listen to them as a community, provide them with materials that account for people’s different reading levels, use culturally appropriate language, and honor the research team’s promises to the residents.

Reflecting on the early days of community-based participatory research, Balls-Berry said that while the methods have evolved, the fundamental principles have not changed. Those principles include having shared ownership of a project, a shared vision, being transparent, and thinking about what comes next in terms of action. Over the years, she has learned that earning trust from the communities participating in research requires being authentically herself, understanding and dealing with her own biases when working with people with different belief systems, tailoring projects to reflect the community’s culture, and accepting that building sustainable, trusting relationships takes time.

PANEL DISCUSSION

Wolf opened the discussion by asking Buchanan if the approach he uses to engage the community is leaving anyone out of the conversation, given that he works with churches and not everyone goes to church. Part of the reason he works with churches is because of a contractual relationship, but another reason is that faith-based organizations have a historical role in the Black community of addressing some of the social determinants of health. “We understand that culture because it is a faith-based culture,” said Buchanan. At the same time, he said, barber shops and beauty salons in the Black community have a culture and he understands that culture, too, and his organization will soon begin a similar program that will reach into those environments. One goal will be to unite those two efforts, the secular and nonsecular, using technology that can bring faith-based and community-based organizations together.

As an example of what he envisions, he described a hypothetical situation in which a health care organization wants to drive a diabetes awareness campaign. Before the health care organization develops collateral material, the community should have the opportunity to review it and do so at a time that is convenient for community members. Using synchronous and asynchronous technology would allow that to happen, so that the health care organization becomes a more equitable partner with the community.

Balls-Berry said it is important to think about the sustainability of these partnerships beyond one or two funding mechanisms and how to keep these partners in the faith community engaged and at the table. Online technology, which played a big role in keeping faith-based communities together during the COVID-19 pandemic, can allow these partners to meet when and where it is convenient for them.

Balls-Berry, Scrimshaw, and Buchanan each emphasized the need to compensate community partners for their expertise, and shared strategies for doing so. Balls-Berry added that she goes to the universities and health systems she works with and makes a case for them to provide sustainable resources to maintain these community advisory groups and compensate their partners for their expertise. Buchanan emphasized that involving the community at the beginning of the grant-writing cycle is the way to ensure that these organizations are part of the budget, not an after-the-fact add-on for which funding then needs to be procured. Scrimshaw added that is the approach she took 30 years ago with one of her projects. She then recounted how one woman on a community advisory board said that the most important thing she possesses is the information

in her head and questioned why she was answering questions for free.

Scrimshaw noted that she had to fight with the academic partner on her community participatory research project in South Central Los Angeles to pay an appropriate amount to the project’s community advisory board members and community researchers. She noted that the advisory board decided that it should be a permanent entity and convinced the Centers for Disease Control and Prevention (CDC) and the UCLA School of Public Health, sponsors of the research project, to provide funding to create a permanent advisory board that is still operating today. The board gets funding from research projects to support its activities and pay community members, approves every research project that goes on in the community, and lets research teams know that it expects the community to be involved in that research. What happened here, said Scrimshaw, is that research in that community has flipped from being university based to being community based.

Cheng’s organization was supported by the Chinese Hospital health system to internalize the community-based programs her organization had established so that today, health system patients get the opportunity to engage in the advance directives program and health fairs within the health system itself. These programs still provide reports to the community. Cheng added that half of the community advisory board members are health system members, but the other half are not. She did this intentionally to learn about the programs that other health systems are offering. She also noted that because of having to transfer in-person programs to an online format during the COVID-19 pandemic, her organization developed and now operates an online conferencing platform through which it offers classes and a texting-based social media platform. Because the text messages come from a trusted entity, people in the community pay attention to the messages and use the information in them.

Wolf asked the panelists if they had any examples of a health literacy strategy that has helped people navigate the barrage of information regarding COVID-19 or any other issue. Buchanan said that during the pandemic, the National COVID-19 Resiliency Network, which comprises some 40 large, ethnically diverse, community-facing organizations designed to reach communities of color across the nation, worked with its members to take the information coming from the CDC and other agencies, interpret it accurately to fit the communities they represent, and use their experts to disseminate that information through their communication channels. “This is absolutely the way some of this work should be done,” said Buchanan.

Scrimshaw spoke about two community outreach and intervention projects in Chicago, one on AIDS prevention and the other on violence prevention, in which community members on the project team were using communication modalities that made sense to their communities. These efforts were so successful, she said, that when the School of Public Health was asked to work on a drug-resistant tuberculosis project that required direct observation therapy to ensure medication adherence, she turned to the community members because they were the only ones who could go into people’s homes and do direct observation. She then recounted a time when the late Sister Sheila Lyne, the Chicago Health Commissioner for a decade, came to the Chicago Board of Health with a poster on AIDS and sexually transmitted diseases for women engaged in the sex trade. Sister Lyne apologized to the board about some of the strong language on the poster, but she had spoken with women in the sex trade and that is the language they wanted to see in these messages. She succeeded with the AIDS prevention program, said Scrimshaw, because she respected and listened to these women irrespective of their profession.

Balls-Berry recalled how when she led community engagement efforts for Mayo Clinic’s Clinical and Translational Science Center, she interviewed key community members and established faculty members to understand the landscape before putting together a community advisory board. By providing Mayo Clinic leadership with the information she gained from those interviews, she got the institution to fund the board rather than having to depend on grants to do so. Balls-Berry noted the challenge of advisory board fatigue,

where programs use the same people to serve on multiple boards. To address this problem, she asks advisory board members to suggest other people in their spheres of influence who could serve on advisory boards. Today, she added as the workshop’s final comment, the leadership team for her research program comprises herself and three other Black women. While she got some pushback, she wanted Black women who understand the culture and needs of the local community to make sure the program was engaged with the community and meeting the community’s needs.

Balls-Berry concluded by reiterating the importance of listening to the community. “If action and acts of service is what the community wants, then that’s what we have to do.”

REFERENCES

DISCLAIMER This Proceedings of a Workshop—in Brief has been prepared by JOE ALPER and M. KELLY MCHUGH as a factual summary of what occurred at the meeting. The statements made are those of the rapporteurs or individual workshop participants and do not necessarily represent the views of all workshop participants; the planning committee; or the National Academies of Sciences, Engineering, and Medicine.

REVIEWERS To ensure that it meets institutional standards for quality and objectivity, this Proceedings of a Workshop—in Brief was reviewed by LAVONNA B. LEWIS, University of Southern California, and EMILY A. BARR, University of Texas Health Science Center Houston. LESLIE SIM, National Academies of Sciences, Engineering, and Medicine served as the review coordinator.

STAFF M. KELLY MCHUGH, ROSE MARIE MARTINEZ, and CRYSTI PARK

SPONSORS This workshop was partially supported by AbbVie, Inc., the California Dental Association, the Department of Health and Human Services, Eli Lilly and Company, Health Literacy Media, Health Literacy Partners, Merck & Co., Inc., the National Institutes of Health, Northwell Health, and Pfizer Inc.

For additional information regarding the workshop, visit https://www.nationalacademies.org/our-work/the-roles-of-trust-and-health-literacy-in-achieving-health-equity-a-workshop-series#sectionSponsors.

Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2023. The roles of trust and health literacy in achieving health equity: Community settings: Proceedings of a workshop—in brief. Washington, DC: The National Academies Press. https://doi.org/10.17226/26889.

Health and Medicine Division Copyright 2023 by the National Academy of Sciences. All rights reserved.