Proceedings of a Workshop—in Brief

The Roles of Trust and Health Literacy in Achieving Health Equity: Public Health Institutions

Proceedings of a Workshop—in Brief

INTRODUCTION

On September 28, 2022, the National Academies of Sciences, Engineering, and Medicine’s Roundtable on Health Literacy hosted the second of three public workshops in a series titled “The Roles of Trust and Health Literacy in Achieving Health Equity.” All three workshops in the series explored how using health literacy best practices might impact trust and how that might positively affect health equity. The first workshop focused on clinical settings, and the final workshop focused on community settings. This workshop, the second in the series, focused on how health literacy best practices might affect trust in public health institutions at the state, local, tribal, and federal levels.¹ The workshop featured case studies from each level followed by a discussion among the five speakers.

Lawrence Smith, executive vice president of Northwell Health, opened the workshop by reiterating that the workshop series focuses on exploring how health literacy can help build trust and contribute to health equity. He also provided a background on the Roundtable on Health Literacy and its promise to share best practices and cutting-edge research around specific topics in health literacy.

Jennifer Dillaha, director of the Arkansas Department of Health and the State Health Officer and roundtable planning committee member, opened the workshop with some framing comments about what trust might look like in public health settings. She also provided a framework for understanding trust that she drew from the book The Speed of Trust (Covey and Merrill, 2018). Trust, said Dillaha, is a function of both character, which includes both integrity and intent, and competence, which refers to an organization’s capabilities in terms of expertise, training, and skills. She explained that trust occurs in different contexts or levels:

• Self-trust, or the confidence one has in oneself.
• Trust within interpersonal relationships, which is affected by several types of behaviors, such as demonstrating respect, creating transparency, righting wrongs, listening first, and keeping commitments.

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• Trust within an organization refers to the structures and systems that build trust among internal stakeholders such as staff or employees.
• Trust outside of an organization refers to the structures and systems that build trust among external stakeholders such as clients or customers.
• Trust on a societal level, which is often based on the public’s perception of whether an organization is creating value for others or for society.

Dillaha said that public health institutions operate at all five levels of trust. “It seems evident to me that implementing the principles of organizational health literacy would likely serve as a reliable means for building trust among both internal and external stakeholders, as well as on a societal level,” said Dillaha. The reason, she said, is that the principles of health literacy depend on respect, humility, and listening first. “What better way to demonstrate that an organization has its clients’ best interests at heart than by putting into place processes, procedures, and training staff to ensure that its clients have accessible information in plain language that they can easily understand and use to make informed decisions,” she added.

CASE STUDIES

Federal Level

Lenora Johnson, director of the Office of Science Policy, Engagement, Education, and Communications at the National Heart, Lung, and Blood Institute of the National Institutes of Health, said that trust is the most fragile concept of the human condition because it is so hard to achieve yet so easily lost. Quoting the same book Dillaha cited, she said, “Trust is like the glue of life. Its most essential ingredient is effective communication,” and added that trust is “the foundational principle that holds all relationships together” (Covey and Merrill, 2018). Johnson’s office is responsible for translating complex research and medical information that is potentially vital to public health; she said that trust is “pivotal” to achieving those goals.

For Johnson, facilitating trust evolves in five domains, the first of which is humility. Humility is paramount, she said, and part of humility is “surrendering to a truth that others may hold but that you do not share.” Johnson elaborated that humility also includes admitting fault and apologizing sincerely when one’s actions have compromised trust. The second domain is being comfortable with ambiguity and accepting that people can perceive any message in several ways. “You would be surprised what people hear in our messages that we did not intend,” said Johnson. One way to limit ambiguity that she has found to be exceptionally helpful is to conduct message testing, soft launches, and other means of seeing how different people might receive a message before deploying it broadly.

The third domain, facilitating trust, Johnson noted, is accepting that perfection is rare and admitting and apologizing when making a mistake. For example, an agency may have enacted a policy that unintentionally disadvantaged some groups or failed to be inclusive. “It is good to admit we could have done better or what we did was wrong,” said Johnson. In fact, she said, the federal government has over time done more apologizing to set a tone that humanizes government. President Clinton, for example, issued a formal apology for the Tuskegee syphilis study, and in 2013, the National Institutes of Health issued an apology and made amends to the family of Henrietta Lacks, whose cells researchers took without permission (National Archives and Records Administration, 1997). Johnson also discussed the 2010 apology from President Obama for the work done on syphilis studies in Guatemala (Tanne, 2010). Such apologies, public or private, are important because they build the bridges and foundations for trust, said Johnson.

The fourth domain is surrender, by which Johnson meant admitting that government is not always the most important source of information because government may not look like, sound like, or live like those to whom they are relaying important messages. Government may be an outsider in a particular setting, and that government may need to take steps to overcome being an outsider. The final domain—and, in Johnson’s view, one of the most important—is to trust and to understand that trust is a reciprocal process. “By trusting others, we garner trust in ourselves,” said Johnson. As a final comment, she said there are many tactics and approaches

that support trust building, but consistency and presence are key.

State Level

Wilma Alvarado-Little, associate commissioner and director of the Office of Minority Health and Health Disparities Prevention at the New York State Department of Health, explained that a commitment and attention to the needs of racial, ethnic, and other underserved populations guides her office’s work. This involves coordinating medical care, preventive health services, dental care, and pharmacy services to achieve health equity, equitable access to services, and equitable health outcomes, Alvarado-Little said. Her office also addresses the provision of culturally and linguistically appropriate services, which go beyond race and ethnicity, and works to infuse health literacy, language access, cultural competence, and health equity awareness within all its efforts.

While doing all this work, she and her colleagues are also concerned with building, fostering, and maintaining trust and trustworthiness by being aware of the language their office uses when communicating with the public, and by providing support to the community groups who are experts in the populations they serve. As an example of the latter, Alvarado-Little said that when her office announces a grant program, it supports community organizations with the complex and often intimidating process of applying for a grant as a way of showing these organizations it is a trustworthy partner when it suggests that they apply for a grant.

During the COVID-19 pandemic, her office faced the challenge of providing trustworthy information and messaging to communities and state-run vaccination sites across New York State. The office provided language identification tools and telephone and video remote interpreting, including in American Sign Language; operated the New York State hotlines with service in multiple languages; updated COVID-19-related guidance as new information became available via a health literacy lens; created vaccine information in multiple languages using health literacy principles; and provided spoken and sign language interpreters at the vaccination sites. This was important, said Alvarado-Little, because otherwise, why would an individual trust the system if they could not communicate in a language that resonated with them?

She emphasized that even if resources are plentiful, it does not matter if the messaging the organization provides is unclear. Especially in situations where someone is trying to obtain and process information when emotions are high, availability does not equate to accessibility.

Another service her office provided during the pandemic was to manage a platform through which the public could submit questions about any concerns they had. Alvarado-Little mentioned that each day, the office received between 15 and 1,500 questions, and it was the office’s responsibility to answer those questions quickly and in a manner that builds trust. For example, one question that came in shortly after the first vaccines were approved asked if it was okay to leave quarantine to get vaccinated. The simple answer would be “no,” but that is not the type of answer that builds trust, according to Alvarado-Little. Instead, the office thanked the individual for their inquiry, advised them not to leave quarantine, and provided information on the next steps they should take, such as providing them with the phone number, URL, and hours of operation for their local vaccination site so they could reschedule their appointment for a time after their quarantine ended.

For the current COVID-19 bivalent booster shot, a vaccine confidence work group, which her office supports, is focusing on creating materials that are easily understood and visually uncomplicated. The materials provide age requirements, the list of vaccines an individual needs to be eligible to receive the booster, and the timeframe for getting the booster. Alvarado-Little emphasized that simplicity is important because of the need to translate each piece of information into the 14 languages mandated by New York State law.

In closing, Alvarado-Little said that when working in the community, actions speak louder than words when it comes to gaining trust. So too is apologizing for

mistakes, as Johnson noted. Further, she added, it can be powerful to say “I don’t know” and to follow up with a process to get the information the community wants. She added that it is also important to feel confident in how one is serving others, to keep the door open for communities to provide feedback, and to create value for the community.

Tribal Level

Philene Herrera, health program manager for the Navajo Health Education Program, Navajo Nation Department of Health, explained that her program provides health education services in four settings: the community, schools, worksites, and selected clinics. Herrera stated that some staff members are bilingual in English and the Navajo language, which is important for conveying information, interpreting, and communicating to meet the health literacy needs of the Navajo population. Herrera noted that the Navajo Nation population is just under 400,000 enrolled members. Two-thirds of the population live on the Navajo Nation located in the southwest corner of the United States which crosses the state boundaries of Utah, New Mexico, and Arizona. Navajo is the first language for less than half of all tribal members. This is critical information when preparing health literate materials and using the Navajo language for interpretation services, she explained.

Herrera emphasized that one critical element for her is the Navajo Nation’s tribal sovereignty status, which means it has direct relations with the federal government and is not subject to state laws. This enables the tribal government to hold the federal government accountable for its treaty obligations. Herrera pointed out that the federal government has broken many treaties and promises over the years, which has led to a mistrust of the federal government among the Navajo people, due to the government’s lack of transparency and failure to be held accountable. Herrera shared an example of an incident that damaged trust in the federal government, which occurred as part of the Centers for Disease Control and Prevention’s (CDC’s) response to the 1993 hantavirus outbreak in the southwestern United States. When CDC investigators arrived at Navajo homes where hantavirus was present, Herrera noted they showed up in “space-like” personal protective equipment, as was appropriate from a scientific perspective. However, because there was little explanation or conversation, and there was a major disparity between the protective gear offered to the community members living in those homes, this incident elevated mistrust and caused an uproar among community members for the lack of cultural sensitivity the researchers demonstrated. Mistrust was further exacerbated because tribal practitioners and tribal members of academia were not included in the investigation.

Herrera explained that the Navajo Health Education Program was involved from the outset of the hantavirus outbreak, and it had the task of communicating findings and prevention methods to the community in the Navajo language. The program continues to be involved in these communication tasks to this present day. Herrera noted that the federal government learned from this experience and today, most federally funded health care organizations employ tribal practitioners who can serve tribal members on their journey to health and wellness in a culturally appropriate manner.

Gerri Chee, a senior health educator at the Health Education Program of the Navajo Department of Health’s Division of Public Health Services, explained that she serves as a liaison between health care providers and community members, so establishing trust between those two groups is an essential part of her job. Health literacy is an important component of her job because how information is delivered and communicated to her people plays a key role in building trust and addressing some of the health disparities that her people face. She noted that the average reading level of tribal members ranges from the fifth to eighth grade, and that Navajo is the primary language for tribal elders. In addition, because Navajo is a descriptive language, her office develops materials for this community with an emphasis on visual learning.

Chee explained that because the Navajo reservation is large, about the size of West Virginia, many tribal members live in remote areas that may be 40 miles from the nearest hospital. Individuals living in remote locations, particularly elderly individuals, get much of

their information from the radio, while the younger population get their information via the internet. Chee said that, in crafting messages for those two avenues, health literacy skills play an important role in providing culturally relevant information, whether through storytelling, culturally appropriate illustrations, or other means.

Local Level

Martha Whyte, regional administrator and regional medical director for the Louisiana Office of Public Health, explained that the northern region of the state that she is responsible for includes a range of urban, rural, and unincorporated communities. While being a medical director might afford her respect, she says that she must still develop trust with them. She stated that she does this through the way she approaches people, her demeanor, her listening skills, the way she speaks to people, and how she shows them respect by hearing them and meeting them where they are. Through these means, community members feel more comfortable with her, which allows them to start building trust.

Whyte explained that she works in both the clinical setting and in population health, so her client may be an individual or an entire community. She is a storyteller, she said, so she told the story of how she gained the trust of a community when it came to addressing the high rate of HIV/AIDS and other sexually transmitted infections (STI), particularly among young African American residents of the region. According to Whyte, Northern Louisiana is a conservative Christian region, so sex education has always been about abstinence. Whyte approached a friend, a Catholic nun who runs the region’s school-based health clinics, and told her the problem. They decided that rather than framing the discussion as one about sex education, they would prepare to discuss health education with the principal of the school she was targeting.

The result was that Whyte created a slide show and interactive games that she previewed to her Catholic nun friend with the idea that if she gave the okay, the principal would be comfortable with the materials, and Whyte could use them in the school without upsetting parents. This program was so well received that she was asked to give the presentation to every English class at the school, and, though parents could have their child opt out, none did. Since then, a rural community school board asked her to make the same presentation to its schools down to the eighth-grade level. Whyte added that after the presentations in the high school concluded, they followed up with three days of STI testing. She expressed that this was a positive example of a trust-building process; trust was built with the principal of the school through “what we did and how we respected their boundaries,” which in turn improved trust with additional principals.

In a second example, she told how she engaged her region’s ministerial alliance to address vaccine hesitancy in the African American community and went to church services to answer any questions the congregants had about the COVID-19 vaccines. “We were blessed to find that we were able to offer vaccine clinics at those churches,” said Whyte. The lesson from this story, she said, was that meeting people where they are, listening to and acknowledging their past experiences, acknowledging their intelligence and fears, and answering questions without judgment were essential for building the trust that the Office of Public Health needs to accomplish goals in communities.

PANEL DISCUSSION

Johnson began the discussion session by elaborating on how to test messages when extensive resources are available and when they are not. The goal of message testing, she said, is to find the best words, approaches, framing, formats, and channels to convey information to a targeted audience. In addition, Johnson stated that when sufficient funds are available, there are for-profit companies that will pull together individuals who represent the targeted communities or populations and test messages with those focus groups. A less expensive approach is to reach out directly to community organizations, tell them what the communication goal is, and invite their support of and participation in message testing. Johnson said she prefers the latter approach because, in addition to garnering trust, the community will have some ownership of the message.

Dillaha, who moderated the discussion, asked Chee to explain the concept of teach-back. Chee replied that teach-back is the opportunity for the clinician to ask the individual questions about the information conveyed to see if the individual took in and understood that information. Dillaha then asked Alvarado-Little the related question of how to ensure that the patient understands information when an interpreter is involved. Alvarado-Little responded that she has worked with her organization’s language service providers to ensure that they can convey medical information accurately and with staff to provide feedback about their experience with a given interpreter. She has also provided every clinician with instructions on how to use an interpreter, both in a virtual or in-person setting, as well as complaint forms in multiple languages that patients could use if they had any concerns after their experience with the interpreter. One thing she requests from the contract language service providers is that they provide her with their code of ethics for health care interpreters since it is her organization’s ethical responsibility to ensure the accuracy and completeness of medical information.

After noting that there must be a process of gaining trust and establishing a trusted relationship, Dillaha asked Herrera to discuss what an outsider who does not know a community can learn about the community and become a trusted messenger. Herrera replied that most federally funded health care organizations working in the Navajo Nation provide cultural awareness orientation to their staff. She wants to see this expanded to include providers who work with the tribal health department. As the liaison to the community, her department can convey to non-Native providers who come to work in the Navajo Nation that she and her colleagues are there to help them develop their relationships with the community. She said that in addition to the orientation they receive at the hospital level, she wants to include them in her department’s public health campaigns, such as those for hepatitis C and monkeypox vaccination. Herrera followed up by noting that this would provide them with an opportunity to engage with the larger community and build relationships with community members.

In terms of public health campaigns, Herrera said her office has contacted nontraditional members of the community, such as lesbian, gay, bisexual, transgender, and queer groups, to help craft public health messages to meet their needs. “We are trying to be as transparent and wholesome as we can and invite all members to join in our public health messaging,” she said. She noted, too, that her office extensively uses social media in its public health messaging.

Herrera said that her department has an agreement with a tribal community college to hire students in public health or have those students use internship hours to learn from health educators how to be trusted messengers. She emphasized that before the COVID-19 pandemic, students shadowed staff as they worked in the community so they could see how to connect with the community when delivering a public health message. Since the pandemic, this is occurring virtually.

Whyte said that many communities have their own trusted messengers, and her office tries to use these community leaders to get messages out to the public. In terms of training, her office created a youth ambassador program during the pandemic with teenagers from local high schools. They received education about COVID-19 and became spokespersons who could answer questions from their friends and on social media. This was so successful that she wants to continue that program in her region to address other issues. For example, she wants to have the youth ambassadors work with their friends and on social media to educate community members about the value of preventive health to address the extremely high infant mortality rate in northern Louisiana.

Referring to the work her office did on sex education and reframing the message to focus on health education to win the support of school principals, Whyte said her office is constantly working with partners to reframe its messages to be most effective. One issue in her region is that people would not follow up on getting routine laboratory tests that their local health clinic recommended. Whyte said the solution has been to have a trusted provider in an individual’s community engage the individual via an immediate telehealth appointment. That provider, meeting face-to-face via technology with the individual, explains who they would see and why they needed to have the ordered tests and schedules an

appointment for them. Follow-up rates skyrocketed, said Whyte.

Chee said her department has also learned to reframe messages and use trusted messengers to deliver important information. Her department revised the science, technology, engineering, and medicine curriculum used in high schools and middle schools to include a focus on reproductive health, including sexually transmitted infections and HIV/AIDS, and on healthy relationships. Chee noted that the curriculum also changed the focus from sex education to “Native health.”

Alvarado-Little said that the department has been fortunate to have trusted community partners whose work supports the vision and mission of the department. She emphasized that those community organizations need not involve the health department because they are experts in their communities, and they know how to deliver appropriate messages that will connect with community members. This close relationship between the health department and community organizations also creates a mechanism for getting feedback on messaging. She noted the importance of the bidirectional trust that has developed between these community organizations and the health department because it lets her feel confident in the work they do, and the organizations feel confident that the health department will support their work.

Dillaha remarked that there are various contexts or levels for trust, with the federal and state levels differing from building trust at the community level, where there may be preexisting personal relationships. Given that, she asked Alvarado-Little for ideas on how state- and federal-level agencies can find trusted partners who truly represent their local communities. Alvarado-Little replied that her office worked hard to develop a reputation as a trusted partner and to treat community organizations with dignity and respect before the pandemic, so that when the office had to contact communities, these relationships were already in place at a time of crisis. The bottom line is that by being honest and transparent, organizations contact her office as much as her office seeks out community organizations. Her office also holds community listening sessions to help identify community partners and build trusting relationships and to provide contact information that communities can use to make recommendations, ask questions, and offer comments. If her office does not have an answer or is not the appropriate resource to address a problem, it will do its best to discover which office is and make the appropriate connection. Finally, Alvarado-Little noted that it is important to demonstrate respect for the community by soliciting and responding to feedback and by compensating community participants for their feedback.

As her final question, Dillaha asked each speaker to talk about how social media and misinformation inhibit trust and how they have addressed this problem. Johnson replied that the only thing that spreads faster than COVID-19 was the misinformation surrounding the virus. “Anyone that has been in communications for a while realizes that it is extremely challenging to get ahead of misinformation,” she said, noting that her department is working on different approaches to do that. Johnson mentioned one approach has been to use town halls and listening sessions to both identify where misinformation is originating and to have trusted experts address the misinformation. These venues provide three opportunities, she said: learning what misinformation is circulating and its source, addressing it on the spot, and educating community members so they can spot and address misinformation on their own. The key, she said, is to ask questions that allow misinformation to surface without being judgmental.

Alvarado-Little recounted when she was managing the governor’s ask-a-question website where anyone could submit a question to the state health department during the pandemic. She noticed that when individuals were hearing incomplete information, they were filling in the missing information with information they may have heard elsewhere. Her office tried to provide the resources it or the CDC had, but people ignored it if it did not agree with their truth, and the back-and-forth emails that resulted were not appropriate, she said. Instead, her office would provide the correct information, appropriate resources, and a means for individuals to submit follow-

up questions. She also noted that they host a very active website that is available in multiple languages. The office followed a similar approach when it received phone calls seeking information, according to Alvarado-Little. She concluded with how important it is to listen first to assess the level of information a caller might have and to identify the areas where there is accurate information and build on that.

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 ELISABETH CLYMER HOCKERSMITH, City of San Antonio Metropolitan Health District and RACHEL GRISHAM, Maryland Department of Health. 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: Public health institutions: Proceedings of a workshop—in brief. Washington, DC: The National Academies Press. https://doi.org/10.17226/26890.

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