The Roles of Trust and Health Literacy in Achieving Health Equity: Public Health Institutions: Proceedings of a Workshop-in Brief (2023)

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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 can help build trust and contribute to health equity. He On September 28, 2022, the National Academies of also provided a background on the Roundtable on Health Sciences, Engineering, and Medicine’s Roundtable Literacy and its promise to share best practices and on Health Literacy hosted the second of three public cutting-edge research around specific topics in health workshops in a series titled “The Roles of Trust and literacy. Health Literacy in Achieving Health Equity.” All three workshops in the series explored how using health Jennifer Dillaha, director of the Arkansas Department literacy best practices might impact trust and how that of Health and the State Health Officer and roundtable might positively affect health equity. The first workshop planning committee member, opened the workshop focused on clinical settings, and the final workshop with some framing comments about what trust might focused on community settings. This workshop, the look like in public health settings. She also provided a second in the series, focused on how health literacy best framework for understanding trust that she drew from practices might affect trust in public health institutions the book The Speed of Trust (Covey and Merrill, 2018). at the state, local, tribal, and federal levels.1 The Trust, said Dillaha, is a function of both character, which workshop featured case studies from each level followed includes both integrity and intent, and competence, by a discussion among the five speakers. which refers to an organization’s capabilities in terms of expertise, training, and skills. She explained that trust Lawrence Smith, executive vice president of Northwell occurs in different contexts or levels: Health, opened the workshop by reiterating that the workshop series focuses on exploring how health literacy • Self-trust, or the confidence one has in oneself. 1 This Proceedings of a Workshop—in Brief highlights the presentations • Trust within interpersonal relationships, which is affected and discussions that occurred at the workshop and is not intended to provide a comprehensive summary of information shared during the by several types of behaviors, such as demonstrating workshop. The workshop was not designed to be a complete historical overview of the topic. For further information, please watch the workshop respect, creating transparency, righting wrongs, recording at https://www.nationalacademies.org/event/09-28-2022/ listening first, and keeping commitments. meeting-2-the-roles-of-trust-and-health-literacy-in-achieving- health-equity-a-workshop-series (accessed December 16, 2022). February 2023 | 1 

• Trust within an organization refers to the structures truth that others may hold but that you do not share.” and systems that build trust among internal Johnson elaborated that humility also includes admitting stakeholders such as staff or employees. fault and apologizing sincerely when one’s actions have compromised trust. The second domain is being • Trust outside of an organization refers to the structures comfortable with ambiguity and accepting that people and systems that build trust among external can perceive any message in several ways. “You would be stakeholders such as clients or customers. surprised what people hear in our messages that we did • Trust on a societal level, which is often based on the not intend,” said Johnson. One way to limit ambiguity public’s perception of whether an organization is that she has found to be exceptionally helpful is to creating value for others or for society. conduct message testing, soft launches, and other means Dillaha said that public health institutions operate of seeing how different people might receive a message at all five levels of trust. “It seems evident to me before deploying it broadly. that implementing the principles of organizational health literacy would likely serve as a reliable means The third domain, facilitating trust, Johnson noted, for building trust among both internal and external is accepting that perfection is rare and admitting and stakeholders, as well as on a societal level,” said Dillaha. apologizing when making a mistake. For example, an The reason, she said, is that the principles of health agency may have enacted a policy that unintentionally literacy depend on respect, humility, and listening first. disadvantaged some groups or failed to be inclusive. “What better way to demonstrate that an organization “It is good to admit we could have done better or what has its clients’ best interests at heart than by putting we did was wrong,” said Johnson. In fact, she said, the into place processes, procedures, and training staff to federal government has over time done more apologizing ensure that its clients have accessible information in to set a tone that humanizes government. President plain language that they can easily understand and use to Clinton, for example, issued a formal apology for the make informed decisions,” she added. Tuskegee syphilis study, and in 2013, the National Institutes of Health issued an apology and made amends CASE STUDIES to the family of Henrietta Lacks, whose cells researchers Federal Level took without permission (National Archives and Records Lenora Johnson, director of the Office of Science Policy, Administration, 1997). Johnson also discussed the Engagement, Education, and Communications at the 2010 apology from President Obama for the work done National Heart, Lung, and Blood Institute of the National on syphilis studies in Guatemala (Tanne, 2010). Such Institutes of Health, said that trust is the most fragile apologies, public or private, are important because they concept of the human condition because it is so hard to build the bridges and foundations for trust, said Johnson. achieve yet so easily lost. Quoting the same book Dillaha cited, she said, “Trust is like the glue of life. Its most The fourth domain is surrender, by which Johnson essential ingredient is effective communication,” and meant admitting that government is not always the most added that trust is “the foundational principle that holds important source of information because government all relationships together” (Covey and Merrill, 2018). may not look like, sound like, or live like those to whom Johnson’s office is responsible for translating complex they are relaying important messages. Government research and medical information that is potentially may be an outsider in a particular setting, and that vital to public health; she said that trust is “pivotal” to government may need to take steps to overcome being achieving those goals. an outsider. The final domain—and, in Johnson’s view, one of the most important—is to trust and to understand For Johnson, facilitating trust evolves in five domains, that trust is a reciprocal process. “By trusting others, the first of which is humility. Humility is paramount, we garner trust in ourselves,” said Johnson. As a final she said, and part of humility is “surrendering to a comment, she said there are many tactics and approaches February 2023 | 2 

that support trust building, but consistency and presence was important, said Alvarado-Little, because otherwise, are key. why would an individual trust the system if they could not communicate in a language that resonated with State Level them? Wilma Alvarado-Little, associate commissioner and director of the Office of Minority Health and Health She emphasized that even if resources are plentiful, Disparities Prevention at the New York State Department it does not matter if the messaging the organization of Health, explained that a commitment and attention provides is unclear. Especially in situations where to the needs of racial, ethnic, and other underserved someone is trying to obtain and process information populations guides her office’s work. This involves when emotions are high, availability does not equate to coordinating medical care, preventive health services, accessibility. dental care, and pharmacy services to achieve health equity, equitable access to services, and equitable health Another service her office provided during the pandemic outcomes, Alvarado-Little said. Her office also addresses was to manage a platform through which the public could the provision of culturally and linguistically appropriate submit questions about any concerns they had. Alvarado- services, which go beyond race and ethnicity, and works Little mentioned that each day, the office received to infuse health literacy, language access, cultural between 15 and 1,500 questions, and it was the office’s competence, and health equity awareness within all its responsibility to answer those questions quickly and in a efforts. manner that builds trust. For example, one question that came in shortly after the first vaccines were approved While doing all this work, she and her colleagues are asked if it was okay to leave quarantine to get vaccinated. also concerned with building, fostering, and maintaining The simple answer would be “no,” but that is not the trust and trustworthiness by being aware of the language type of answer that builds trust, according to Alvarado- their office uses when communicating with the public, Little. Instead, the office thanked the individual for and by providing support to the community groups who their inquiry, advised them not to leave quarantine, and are experts in the populations they serve. As an example provided information on the next steps they should take, of the latter, Alvarado-Little said that when her office such as providing them with the phone number, URL, announces a grant program, it supports community and hours of operation for their local vaccination site so organizations with the complex and often intimidating they could reschedule their appointment for a time after process of applying for a grant as a way of showing these their quarantine ended. organizations it is a trustworthy partner when it suggests that they apply for a grant. For the current COVID-19 bivalent booster shot, a vaccine confidence work group, which her office supports, is During the COVID-19 pandemic, her office faced the focusing on creating materials that are easily understood challenge of providing trustworthy information and and visually uncomplicated. The materials provide age messaging to communities and state-run vaccination requirements, the list of vaccines an individual needs sites across New York State. The office provided language to be eligible to receive the booster, and the timeframe identification tools and telephone and video remote for getting the booster. Alvarado-Little emphasized interpreting, including in American Sign Language; that simplicity is important because of the need to operated the New York State hotlines with service in translate each piece of information into the 14 languages multiple languages; updated COVID-19-related guidance mandated by New York State law. as new information became available via a health literacy lens; created vaccine information in multiple languages In closing, Alvarado-Little said that when working in using health literacy principles; and provided spoken and the community, actions speak louder than words when sign language interpreters at the vaccination sites. This it comes to gaining trust. So too is apologizing for February 2023 | 3 

mistakes, as Johnson noted. Further, she added, it can like” personal protective equipment, as was appropriate be powerful to say “I don’t know” and to follow up with from a scientific perspective. However, because there a process to get the information the community wants. was little explanation or conversation, and there was She added that it is also important to feel confident in a major disparity between the protective gear offered how one is serving others, to keep the door open for to the community members living in those homes, communities to provide feedback, and to create value for this incident elevated mistrust and caused an uproar the community. among community members for the lack of cultural sensitivity the researchers demonstrated. Mistrust was Tribal Level further exacerbated because tribal practitioners and Philene Herrera, health program manager for the Navajo tribal members of academia were not included in the Health Education Program, Navajo Nation Department investigation. of Health, explained that her program provides health education services in four settings: the community, Herrera explained that the Navajo Health Education schools, worksites, and selected clinics. Herrera stated Program was involved from the outset of the hantavirus that some staff members are bilingual in English and outbreak, and it had the task of communicating findings the Navajo language, which is important for conveying and prevention methods to the community in the Navajo information, interpreting, and communicating to meet language. The program continues to be involved in the health literacy needs of the Navajo population. these communication tasks to this present day. Herrera Herrera noted that the Navajo Nation population is noted that the federal government learned from this just under 400,000 enrolled members. Two-thirds of experience and today, most federally funded health care the population live on the Navajo Nation located in the organizations employ tribal practitioners who can serve southwest corner of the United States which crosses tribal members on their journey to health and wellness in the state boundaries of Utah, New Mexico, and Arizona. a culturally appropriate manner. Navajo is the first language for less than half of all tribal members. This is critical information when preparing Gerri Chee, a senior health educator at the Health health literate materials and using the Navajo language Education Program of the Navajo Department of Health’s for interpretation services, she explained. Division of Public Health Services, explained that she serves as a liaison between health care providers and Herrera emphasized that one critical element for her community members, so establishing trust between those is the Navajo Nation’s tribal sovereignty status, which two groups is an essential part of her job. Health literacy means it has direct relations with the federal government is an important component of her job because how and is not subject to state laws. This enables the tribal information is delivered and communicated to her people government to hold the federal government accountable plays a key role in building trust and addressing some of for its treaty obligations. Herrera pointed out that the health disparities that her people face. She noted that the federal government has broken many treaties and the average reading level of tribal members ranges from promises over the years, which has led to a mistrust of the fifth to eighth grade, and that Navajo is the primary the federal government among the Navajo people, due language for tribal elders. In addition, because Navajo is to the government’s lack of transparency and failure to a descriptive language, her office develops materials for be held accountable. Herrera shared an example of an this community with an emphasis on visual learning. incident that damaged trust in the federal government, which occurred as part of the Centers for Disease Control Chee explained that because the Navajo reservation and Prevention’s (CDC’s) response to the 1993 hantavirus is large, about the size of West Virginia, many tribal outbreak in the southwestern United States. When CDC members live in remote areas that may be 40 miles investigators arrived at Navajo homes where hantavirus from the nearest hospital. Individuals living in remote was present, Herrera noted they showed up in “space- locations, particularly elderly individuals, get much of February 2023 | 4 

their information from the radio, while the younger parents. This program was so well received that she was population get their information via the internet. Chee asked to give the presentation to every English class at said that, in crafting messages for those two avenues, the school, and, though parents could have their child health literacy skills play an important role in providing opt out, none did. Since then, a rural community school culturally relevant information, whether through board asked her to make the same presentation to its storytelling, culturally appropriate illustrations, or other schools down to the eighth-grade level. Whyte added means. that after the presentations in the high school concluded, they followed up with three days of STI testing. She Local Level expressed that this was a positive example of a trust- Martha Whyte, regional administrator and regional building process; trust was built with the principal of medical director for the Louisiana Office of Public Health, the school through “what we did and how we respected explained that the northern region of the state that she their boundaries,” which in turn improved trust with is responsible for includes a range of urban, rural, and additional principals. unincorporated communities. While being a medical director might afford her respect, she says that she In a second example, she told how she engaged her must still develop trust with them. She stated that she region’s ministerial alliance to address vaccine hesitancy does this through the way she approaches people, her in the African American community and went to church demeanor, her listening skills, the way she speaks to services to answer any questions the congregants had people, and how she shows them respect by hearing them about the COVID-19 vaccines. “We were blessed to and meeting them where they are. Through these means, find that we were able to offer vaccine clinics at those community members feel more comfortable with her, churches,” said Whyte. The lesson from this story, which allows them to start building trust. she said, was that meeting people where they are, listening to and acknowledging their past experiences, Whyte explained that she works in both the clinical acknowledging their intelligence and fears, and setting and in population health, so her client may be an answering questions without judgment were essential for individual or an entire community. She is a storyteller, building the trust that the Office of Public Health needs she said, so she told the story of how she gained the to accomplish goals in communities. trust of a community when it came to addressing the high rate of HIV/AIDS and other sexually transmitted PANEL DISCUSSION infections (STI), particularly among young African Johnson began the discussion session by elaborating American residents of the region. According to Whyte, on how to test messages when extensive resources are Northern Louisiana is a conservative Christian region, available and when they are not. The goal of message so sex education has always been about abstinence. testing, she said, is to find the best words, approaches, Whyte approached a friend, a Catholic nun who runs framing, formats, and channels to convey information the region’s school-based health clinics, and told her to a targeted audience. In addition, Johnson stated the problem. They decided that rather than framing that when sufficient funds are available, there are for- the discussion as one about sex education, they would profit companies that will pull together individuals prepare to discuss health education with the principal of who represent the targeted communities or populations the school she was targeting. and test messages with those focus groups. A less expensive approach is to reach out directly to community The result was that Whyte created a slide show and organizations, tell them what the communication goal is, interactive games that she previewed to her Catholic and invite their support of and participation in message nun friend with the idea that if she gave the okay, the testing. Johnson said she prefers the latter approach principal would be comfortable with the materials, and because, in addition to garnering trust, the community Whyte could use them in the school without upsetting will have some ownership of the message. February 2023 | 5 

Dillaha, who moderated the discussion, asked Chee community, such as lesbian, gay, bisexual, transgender, to explain the concept of teach-back. Chee replied and queer groups, to help craft public health messages to that teach-back is the opportunity for the clinician meet their needs. “We are trying to be as transparent and to ask the individual questions about the information wholesome as we can and invite all members to join in conveyed to see if the individual took in and understood our public health messaging,” she said. She noted, too, that information. Dillaha then asked Alvarado-Little that her office extensively uses social media in its public the related question of how to ensure that the patient health messaging. understands information when an interpreter is involved. Alvarado-Little responded that she has worked with her Herrera said that her department has an agreement organization’s language service providers to ensure that with a tribal community college to hire students in they can convey medical information accurately and with public health or have those students use internship staff to provide feedback about their experience with a hours to learn from health educators how to be trusted given interpreter. She has also provided every clinician messengers. She emphasized that before the COVID-19 with instructions on how to use an interpreter, both pandemic, students shadowed staff as they worked in in a virtual or in-person setting, as well as complaint the community so they could see how to connect with forms in multiple languages that patients could use if the community when delivering a public health message. they had any concerns after their experience with the Since the pandemic, this is occurring virtually. interpreter. One thing she requests from the contract language service providers is that they provide her with Whyte said that many communities have their own their code of ethics for health care interpreters since it trusted messengers, and her office tries to use these is her organization’s ethical responsibility to ensure the community leaders to get messages out to the public. In accuracy and completeness of medical information. terms of training, her office created a youth ambassador program during the pandemic with teenagers from local After noting that there must be a process of gaining trust high schools. They received education about COVID-19 and establishing a trusted relationship, Dillaha asked and became spokespersons who could answer questions Herrera to discuss what an outsider who does not know a from their friends and on social media. This was so community can learn about the community and become successful that she wants to continue that program in her a trusted messenger. Herrera replied that most federally region to address other issues. For example, she wants to funded health care organizations working in the Navajo have the youth ambassadors work with their friends and Nation provide cultural awareness orientation to their on social media to educate community members about staff. She wants to see this expanded to include providers the value of preventive health to address the extremely who work with the tribal health department. As the high infant mortality rate in northern Louisiana. liaison to the community, her department can convey to non-Native providers who come to work in the Navajo Referring to the work her office did on sex education Nation that she and her colleagues are there to help and reframing the message to focus on health education them develop their relationships with the community. to win the support of school principals, Whyte said her She said that in addition to the orientation they receive office is constantly working with partners to reframe at the hospital level, she wants to include them in her its messages to be most effective. One issue in her department’s public health campaigns, such as those region is that people would not follow up on getting for hepatitis C and monkeypox vaccination. Herrera routine laboratory tests that their local health clinic followed up by noting that this would provide them with recommended. Whyte said the solution has been to have an opportunity to engage with the larger community and a trusted provider in an individual’s community engage build relationships with community members. the individual via an immediate telehealth appointment. That provider, meeting face-to-face via technology with In terms of public health campaigns, Herrera said her the individual, explains who they would see and why office has contacted nontraditional members of the they needed to have the ordered tests and schedules an February 2023 | 6 

appointment for them. Follow-up rates skyrocketed, said holds community listening sessions to help identify Whyte. community partners and build trusting relationships and to provide contact information that communities Chee said her department has also learned to reframe can use to make recommendations, ask questions, and messages and use trusted messengers to deliver offer comments. If her office does not have an answer important information. Her department revised or is not the appropriate resource to address a problem, the science, technology, engineering, and medicine it will do its best to discover which office is and make curriculum used in high schools and middle schools to the appropriate connection. Finally, Alvarado-Little include a focus on reproductive health, including sexually noted that it is important to demonstrate respect for transmitted infections and HIV/AIDS, and on healthy the community by soliciting and responding to feedback relationships. Chee noted that the curriculum also and by compensating community participants for their changed the focus from sex education to “Native health.” feedback. Alvarado-Little said that the department has been As her final question, Dillaha asked each speaker to talk fortunate to have trusted community partners whose about how social media and misinformation inhibit trust work supports the vision and mission of the department. and how they have addressed this problem. Johnson She emphasized that those community organizations replied that the only thing that spreads faster than need not involve the health department because they COVID-19 was the misinformation surrounding the are experts in their communities, and they know how virus. “Anyone that has been in communications for to deliver appropriate messages that will connect with a while realizes that it is extremely challenging to get community members. This close relationship between ahead of misinformation,” she said, noting that her the health department and community organizations also department is working on different approaches to do creates a mechanism for getting feedback on messaging. that. Johnson mentioned one approach has been to use She noted the importance of the bidirectional trust that town halls and listening sessions to both identify where has developed between these community organizations misinformation is originating and to have trusted experts and the health department because it lets her feel address the misinformation. These venues provide three confident in the work they do, and the organizations feel opportunities, she said: learning what misinformation confident that the health department will support their is circulating and its source, addressing it on the spot, work. and educating community members so they can spot and address misinformation on their own. The key, she said, Dillaha remarked that there are various contexts or is to ask questions that allow misinformation to surface levels for trust, with the federal and state levels differing without being judgmental. from building trust at the community level, where there may be preexisting personal relationships. Given that, Alvarado-Little recounted when she was managing the she asked Alvarado-Little for ideas on how state- and governor’s ask-a-question website where anyone could federal-level agencies can find trusted partners who truly submit a question to the state health department during represent their local communities. Alvarado-Little replied the pandemic. She noticed that when individuals were that her office worked hard to develop a reputation as hearing incomplete information, they were filling in the a trusted partner and to treat community organizations missing information with information they may have with dignity and respect before the pandemic, so that heard elsewhere. Her office tried to provide the resources when the office had to contact communities, these it or the CDC had, but people ignored it if it did not agree relationships were already in place at a time of crisis. with their truth, and the back-and-forth emails that The bottom line is that by being honest and transparent, resulted were not appropriate, she said. Instead, her organizations contact her office as much as her office office would provide the correct information, appropriate seeks out community organizations. Her office also resources, and a means for individuals to submit follow- February 2023 | 7 

up questions. She also noted that they host a very active National Archives and Records Administration. 1997. website that is available in multiple languages. The office Remarks by the president in apology for study done followed a similar approach when it received phone in Tuskegee. https://clintonwhitehouse4.archives. calls seeking information, according to Alvarado-Little. gov/New/Remarks/Fri/19970516-898.html (accessed She concluded with how important it is to listen first to January 13, 2023). assess the level of information a caller might have and to identify the areas where there is accurate information Tanne, J. H. 2010. President Obama apologizes to and build on that. Guatemala over 1940s syphilis study. British Medical Journal (341):c5494. https://doi.org/10.1136/bmj. REFERENCES c5494. Covey, S. M. R., and R. R. Merrill. 2018. The speed of trust: The one thing that changes everything. New York, NY: Simon & Schuster. 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.