4

Equity, Risk Communication, and Public Engagement

The COVID-19 pandemic highlighted the value of strong communication strategies and relationships with communities for a robust emergency response. This chapter summarizes discussions on risk communication and public engagement, specifically considering crisis communications and lessons learned from past events. Speakers discuss ethics and equity with historically marginalized populations, as well as suggestions on changes needed moving forward.

EQUITY AND ENGAGEMENT WITH HISTORICALLY MARGINALIZED POPULATIONS

The inequities we have seen with the pandemic were certainly not a surprise, said Joneigh Khaldun, vice president and chief health equity officer at CVS Health. Whether cardiovascular disease, mental health, or cancer, people who have been historically marginalized in society tend to have more severe outcomes or lose their lives. But we need to recognize that there is no gene or amount of melanin in someone’s skin that determines if they will have a lower life expectancy, she explained. Instead, their interaction and engagement with systems and structures in their lives shape these outcomes. This section reviews some of the planning and equity efforts within the federal government and offers reflections from leaders through lived experiences.

Planning and Equity Within the Federal Government

Robinsue Frohboese, principal deputy director of the Office for Civil Rights at the U.S. Department of Health and Human Services (HHS), explained that equity is a focal point of the federal government’s response to COVID-19 and preparing for the future. She provided an overview of lessons learned around equity, beginning with nondiscrimination. Frohboese recalled President Biden’s Executive Order 13995, as one of his first acts in office, which ensured an equitable pandemic response and recovery. The executive order created a Health Equity Task Force of individuals with expertise and lived experiences to study the issue, seek stakeholders’ views, and submit recommendations to the White House. In October 2021, the task force provided its recommendations, with key points that she shared outlined in Box 4-1.

Frohboese reminded participants of some of the issues related to nondiscrimination. The HHS Office for Civil Rights has been involved for many years in bringing the civil rights perspective to public health emergencies. From the outset of COVID-19, Frohboese said, we recognized the importance of getting guidance to consumers, providers, health care planners, and others, so everyone understood their rights and the obligations of others during the pandemic.

There are some basic principles underlying nondiscrimination that apply to any entity that receives federal funds, including federal civil rights statutes that prohibit discrimination on the basis of race, color, national origin (including limited English proficiency), disability, age, and sex. These same requirements remain in effect during a public health emergency. In addition to providing guidance and technical assistance, the Office for Civil

Rights is also a law enforcement agency. During COVID-19, her office received more than 10,000 COVID-19 complaints, including violations of civil rights and the Health Insurance Portability and Accountability Act (HIPAA). She highlighted a few examples and themes from the thousands of complaints (Box 4-2).

Frohboese also noted the role of the National Academies of Sciences, Engineering, and Medicine in promoting equity principles throughout their webinars on COVID-19. She asked the group, from all of the webinars, reports, and studies conducted to date, what are the messages and lessons learned? To put it all together, she shared some best practices for equity and engagement in public health emergency preparedness and response, listed in Box 4-3.

Administration for Strategic Preparedness and Response

Daniel Dodgen, senior advisor for Strategy, Policy, Planning, and Requirements for the Administration for Strategic Preparedness and Response (ASPR) at HHS (formerly the HHS Office of the Assistant Secretary for Preparedness and Response) reviewed several of the programs within ASPR that support preparedness and planning. Looking more closely at a few programs, he shared some of its efforts that promote equity. For example, since the start of the COVID-19 pandemic ASPR has launched efforts to make monoclonal

antibody therapeutics available as COVID-19 treatments in communities that were disproportionately affected by the pandemic, by promoting widespread and equitable access for underserved and vulnerable populations. He also reviewed the ASPR Technical Resources, Assistance Center, and Information Exchange (TRACIE) program that collects tools, templates, and resources that are immediately implementable for people looking for help on various topics. They have subpages on ethics, access and functional needs, disasters and health care disparity, home care and hospice, and more.

ASPR also has agreements to provide interpretation and translation services, enabling ASPR to provide more culturally and linguistically appropriate services to communities. The idea is to promote disaster recovery processes that are more equitable, he explained. There are three key things in a disaster that create inequity, he said. First, there is vulnerability to exposure, which disproportionately affects people with underlying conditions; then during a disaster there are often challenges around access and equity of care. Finally, in the recovery phase, there are often access issues for available resources. So it can become a “triple whammy” for marginalized communities.

Dodgen also provided an overview of the four federal advisory committees within ASPR. These are mandated by Congress and allow opportunities for nonfederal employees to provide advice and guidance to federal agencies. ASPR’s federal advisory committees include the National Advisory

Committee on Children and Disasters, National Advisory Committee on Seniors and Disasters, National Advisory Committee on Individuals with Disabilities and Disasters, and the National Biodefense Science Board.

Reflections Through Lived Experience

Jean Accius, senior vice president of Global Thought Leadership at AARP, said 90 percent of all COVID-19 deaths affected someone over the age of 50. “How do we start to build an infrastructure to become more resilient and support populations living longer,” he asked. He also highlighted an alarming trend—the disproportionate effect the pandemic has had on communities of color, as shown across several indicators. This issue of equity has multiple dimensions that are critically important. One of the key responses he wanted to offer is considering the economic costs. This is not just the effect of lost lives, he said; it also includes the economic costs to society. There is a large economic effect that stifles economic growth downstream affecting everyone, making these issues of equity much broader than just the direct effects to the community of concern.

He shared research he conducted with economists and found that racial disparities in life expectancy will cost the U.S. government $1.6 trillion by 2030. That number is equal to the combined economies of Massachusetts and Virginia. This is an opportunity for all sectors to come together and think about how to solve these complex problems, he said. Accius called for more investment in infrastructure, reiterating the public health concept of a person’s health code being determined by their zip code. He also advocated for closing opportunity gaps in these marginalized communities, allowing everyone to benefit as a result.

In addition to public health infrastructure, he said, there is also an opportunity to think more holistically about the integration of health and other systems. For example, think about the effect on nursing home residents over the last 2 years, he said. We need to think about what the opportunities are not only to modernize and transform facilities but also how we better integrate older adults into communities, he said. Particularly as individuals age, they are using both health care and nursing home systems. Key lessons have emerged that need to be acted on to protect the most vulnerable and ensure that they are in the driver’s seat for their own destiny.

Sometimes the vision does not necessarily match up with reality, said Jacque Gray, research associate professor and associate director of Indigenous Programs in the Center for Rural Health at the University of North Dakota. For example, she said, our older adults in rural and tribal remote areas were afraid to go into tertiary centers in urban areas because they were afraid of getting COVID-19. So they were not getting the care they needed to stay healthy. This mismatch also includes the workforce; she pointed out that

there are very few American Indian psychologists and health care providers. There is a critical need for more people who understand the culture and can work closely with patients. We were able to shift care locations and keep older adults safe at home and well fed during the pandemic, she explained, but now they do not want to come back to the senior centers and are afraid it is not safe.

Some of these various responses to the pandemic need to be addressed in different ways. For example, Gray explained that the psychological issues need to be addressed by examining some of the behavioral health effects in our communities. Some of the response triggered historical trauma with tribes because several centers received body bags when they placed orders for personal protective equipment (PPE). They were forced to step back and gather their resilience and made their own gowns for PPE out of the body bags. But we still need to recognize behavioral health issues and the resilience many have to ongoing challenges, she said. Several areas have a lack of resources, so telling people they have to wash their hands more often when they do not even have running water is a misguided recommendation that is not grounded in their reality. Similarly, she said, getting kids at home on the Internet for school when their rural community or remote area has no broadband connection or cell towers is also not a true solution.

There are also sovereignty issues that arise when working with tribes, as mentioned in Chapter 3. For example, in one instance a governor was asked if the tribes would be a part of vaccine trials. He said yes but did not ask the tribes if they agreed. Just because states get money for tribes does not mean it is equitably shared, she noted, so these are all important considerations when thinking about equity.

In terms of what went well during their pandemic experience, she said the Federal Emergency Management Agency (FEMA) was very flexible working with tribes in how money could be spent, which allowed each community to determine what they needed and how they should use it. Because of multigenerational households, she advocated for the need to vaccinate households, not age groups. If you are able to vaccinate the grandparents in a home but not the rest of the family, she explained, you really are not decreasing the risk.

Discussion

Centering the discussion, Khaldun said health equity cannot just be a side program, it needs to be intentional and embedded into everything being done. Her team working at the state level in Michigan was one of the first groups to release race and ethnicity data. She also added the importance of engaging with marginalized communities prior to a health emergency. One

of the more difficult activities of response was determining how to allocate a very limited supply of vaccines at the beginning.

“On the ground, we know there is a disconnect between what the law requires, best practices, and what’s actually happening,” said Frohboese. She added that one of the really important things that has emerged during COVID-19 is understanding the importance of nondiscrimination, and for the first time there was traction on trying to come up with workable solutions. It is one thing to provide guidance about how to avoid discriminating, Frohboese said, but it is also important to work with subject-matter experts who are on the ground and who can provide concrete tools to ensure nondiscrimination.

Dodgen added that it is important to be incredibly nuanced when thinking about populations who are going to be at greater risk in different scenarios. “I think we have known that,” he acknowledged, “but as government, we have not been as nuanced as we ought to be in our approach up until now.” For example, he pointed out that agencies have asked people if they are thinking about vulnerable members of the community, but now realize that there needs to be a more comprehensive approach in how these issues are addressed and what kind of guidance or assistance is offered.

Khaldun then asked for reflections on tangible, tactical ways to make sure that preparedness and response in communities are conducted equitably. Accius said there have been many lessons learned during this pandemic that need to be incorporated to create a continuum of care that meets the needs of a range of people. First, this care needs to be person and family centered. As part of the process of physical distancing, families were not able to visit loved ones during the pandemic, and there were huge implications for that. As we start to move forward and think about the continuum of care people might want for themselves, he suggested, we should start out with the idea of equity and outlining what it looks like on the ground. He offered questions like, “Do you see me?” “Do you hear me?” “Am I able to age with dignity and purpose?” “Do I have autonomy?” In the U.S. context, there is a huge variation in the answers to these questions based on race and ethnicity. He called for operationalizing the idea of person and family centeredness that meets older adults where they are. But with regard to infection rates and emergency preparedness, there are lessons that have emerged in how to embed better daily practices.

A participant asked what successful preparedness and response would look like if local health departments were fully funded. Accius said it would be hugely influential to have robust data to really understand the gaps and needs of a community and be able to tailor that to solve problems. The lack of data at that granular level has been a challenge over the last 2 years and has made it more difficult to solve problems in an equitable way. The level of technology is also variable depending on the

area, said Gray. She shared that they tried to work with telehealth, because in Indian Health Services some people might have to wait half a day for appointments.

Anne Zink, chief medical officer of Alaska State Health Department, asked how new infrastructure money for broadband will affect equity, and how geography might affect equity. For example, she noted that she may receive only one shipment of Paxlovid, but the communities that need it are 200 miles apart. With vaccines, her team was able to get the allocation distributed monthly instead of weekly, which helped to overcome some of the structural barriers.

This is the reality for many communities, replied Dodgen. “We are definitely aware of these issues,” he said. “But prior to COVID-19, we weren’t pushing as hard as we should have to figure out how to really achieve equity.” He said it has gotten much better in the 2 years since the start of the pandemic, but there is still more to do. This is part of why ASPR has convened the three new advisory committees, to get help and guidance working with various populations, taking great care to have diverse geographic and intellectual perspectives. Dodgen suggested that health needs to be desiloed from other sectors, because if you cannot get to the clinic, you cannot get the vaccine, he said. Part of reducing marginalization, he continued, is reducing the gaps in all the different services (e.g., childcare, food security, transportation) that support communities so when there is an emergency or health crisis we are creating the linkages that allow for a streamlined response.

A participant called attention to the clear and present danger of the staffing crisis within long-term care centers, not just threatening that group but also threatening the functionality of acute care as the pandemic waxes and wanes. Are there ways to address the staffing crisis within long-term care, she asked? Accius replied that this specific workforce was underpaid and undervalued even prior to the pandemic, and more and more people are starting to see the implications of not making those investments. Particularly, he called out the importance of looking at increasing compensation for the direct care workforce and ensuring that they have benefits. As many of these workers also receive food stamps or Medicaid for health insurance, Accius advocated for supporting them better and developing a better career trajectory. “How do we start to create a broad ecosystem that removes some of the pressures on the workforce itself?” he asked. To address these issues in Japan, he said, technology and robotics are used to handle some of the tasks and take the burden off of workers. He also suggested thinking of opportunities to encourage aging in a person’s home, which is usually people’s preference, in addition to being more cost-effective. Currently there are discrepancies in policies in terms of preference and economics, so policies could be aligned to encourage long-term care provided in people’s

homes. Finally, he highlighted family caregivers, saying that they need support, and this could be an opportunity to provide them compensation to start to fill some of the gaps and maintain quality of life. He insisted on starting all of this now, or the system will continue to break down.

RISK COMMUNICATION AND PUBLIC ENGAGEMENT

Risk communication and public engagement have been recurring themes throughout these discussions, said Richard Serino, distinguished senior fellow at the National Preparedness Leadership Initiative at the Harvard T.H. Chan School of Public Health. This section highlights various experiences in communication and engagement during the pandemic, with further discussion featuring challenges and what is needed for future events.

Elements Influencing Crisis Communications

Howard Koh, Fineberg Professor of the Practice of Public Health Leadership at the Harvard T.H. Chan School of Public Health and Harvard Kennedy School, led with some reflections on risk communication throughout his career. He noted that he first became immersed in the topic when he served as the Massachusetts commissioner of public health during 9/11 and the anthrax attacks. That unimaginable crisis demanded that all public health leaders nationwide protect people from bioterrorism, with a major emphasis on emergency risk communication. It was an instantaneous and historic transformation for public health, he said. Later, he revisited these lessons at HHS when he began his service as assistant secretary for health during the H1N1 pandemic in 2009–2010. From these experiences, he learned how public health had to embrace emergency preparedness and risk communication as core parts of its mission. He noted that while the major elements of ideal crisis communication regularly focus on having trusted messengers delivering messages that are easily understood and based on high-quality science, the context is much broader than that (see Figure 4-1). Communicators can be very well intentioned, Koh stated, but sometimes the message is not received in the right way, thereby requiring feedback loops, refinement, external reinforcement through unified political support, and overriding trust. Such efforts can lead to a new social norm, he said.

Looking at Figure 4-1, Koh noted that the last 2 years featured few of these ideal elements that needed to be addressed. Importantly, he reflected, communication efforts during the pandemic were delivered in an environment where critics rarely understood that messengers must change the message as new knowledge about the evolving science becomes available.

The major theme throughout the pandemic is declining trust, said Koh. He shared data documented by Harvard showing the declining trust in the

federal government over the last 60 years, falling from 77 percent (1958) to just 24 percent (2021) (Blendon and Benson, 2022a). When exploring these trends further, polls indicate that doctors, nurses, and health care workers had much higher trust related to recommendations to improve health when compared to state or federal health agencies or the surgeon general (see Figure 4-2). Worldwide, higher levels of electoral democracy and governmental trust have been associated with greater COVID-19 vaccinations and fewer COVID-19 infections (Bollyky et al., 2022). Interestingly, he noted that firefighters and members of the military have the highest levels of trust in government (Blendon and Benson, 2022b).

Koh cited some of the communication challenges that have emerged throughout the COVID-19 pandemic. For example, the term fully vaccinated does not necessarily mean fully protected, as some might imply, he noted. Similarly, boosted may imply extra, but it is not essential to many. Koh explained that everyone demands the simplest guidance possible in the midst of complex and dynamic phases of the pandemic. Therefore, promoting sustained behavior change requires more attention to strategies that have successfully changed the social norm in other areas of public health, he said. Examples include people adopting bike helmets, living in and demanding smoke-free environments, and wearing seatbelts. Early tobacco control debates also centered on individual choice, until studies documented the dangers of second-hand smoke. For example, he said, the “Tips From Former Smokers” media campaign, sponsored by the Centers for Disease Control and Prevention (CDC), that has run on national TV for the past several decades and contributes to changing norms, increased quit attempts and increased smoking cessation rates. Such lessons could be helpful for COVID-19 vaccination to become the norm (Bazell et al., 2022), Koh noted.

Misinformation and Disinformation

To push back against a body of facts, you must create doubt, which is what so much misinformation and disinformation does, said Tara Kirk Sell, senior scholar at the Johns Hopkins Center for Health Security. Johns Hopkins began looking into misinformation during the Ebola crisis in the United States in 2014, she said, and looked at tweets about Ebola, noting that 5 percent were false, and 5 percent were partially false (i.e., they began as true but added misleading statements) (Sell et al., 2020). Then during the COVID-19 pandemic, she explained how so many people staying home during the initial waves and quarantine led to them finding several groups online who were similar to themselves. People were no longer going out in the world and interacting with others who might have different views.

Sell reviewed the costs of misinformation and disinformation from the research. Just related to nonvaccination, she said, misinformation and disinformation resulting in nonvaccination costs an estimated $50 to $300 billion each day. On the other hand, an effort that reduced or countered misinformation and was able to reduce related nonvaccination by just 10 percent would be worth between $5 and $30 million each day (Bruns et al., 2021).

She shared a call for a national strategy put forth by the Center for Health Security, and offered four key strategy pillars:

• Control: Control misleading content and sources.
• Promote: Promote factual information, prioritize public health risk communication, and coordinate with social and news media.
• Resilience: Increase public resilience through health and digital literacy.
• Stakeholders: Bring all stakeholders together, including government, civil society, and industry.

Moving forward, she identified critical needs for the future. Lots of people have lost trust, she explained, so building trust and then maintaining it is key, as well as engaging with people’s identity, and noting their values, core beliefs, and affiliations and acknowledging their concerns. Finally, she said we need to expect misinformation to happen in future similar situations and have a plan for debunking it when it emerges.

Communication in Public Health Emergencies

When you think about the 10 essential services of public health, said Brian Castrucci, president and chief executive officer of the de Beaumont Foundation, we are focusing on this communication piece. These 10 services were never meant to be limited to just governmental public health, but they should really exist within a community more broadly. For example, sometimes communication is handled outside government. But examining the challenges throughout this pandemic, he echoed some of the other things that have been mentioned, such as lack of clear and consistent messaging and lack of nuanced messaging.

Most messaging strategies are based on a survey of 1,200 people, he explained, which lacks the nuance that is needed for the entire population. He highlighted the fact that public health leaders were new to businesses and the public and argued that disinformation must be named as a public health crisis. There are mechanisms that are not being used to control the spread of disinformation. When you think about the erosion of trust in the media, and erosion of trust in the government, he said, if we also

watch trust in science and medicine erode, then “the game is over.” It becomes easy for people to believe an election might be stolen or other false rumors.

We are really good at science and preparedness, said Castrucci, but public health as a sector is not a good communicator. He mentioned the Public Health Communications Collaborative (PHCC),¹ which brings together several organizations to curate consistent messaging and resources. This is especially useful for those public health departments that do not have a dedicated communications person. PHCC is coming together with webinars, addressing tough questions. Lastly, he shared a toolkit called Phrases, which is public health reaching across sectors, and acts as a communications guide for a chief health strategist. We need to start building relationships and, as Sell said, build trust back so people will be more receptive to public health messaging and guidance.

Christina Farrell, first deputy commissioner of New York City Emergency Management, discussed its messaging strategy in the face of all of these communication challenges. Typically, she said, we are messaging more frequently about natural disasters, so we had a lot to learn for a public health emergency. The main way it sends messages is through a system called NotifyNYC that now has 1 million subscribers. Farrell pointed out that there are an additional 8 million people living in New York City, so there is still a way to go before reaching the majority of the population. Since NotifyNYC is an opt-in system, she explained it has a short code element where they were able to set up short codes for people to get on specific sublists about different events or to hear messaging in specific languages. The effort leaned heavily on text solutions to get information out there and worked with cell phone providers so messaging was free.

She also described the difficulty in coordinating messages across governmental levels. For example, the mayor would say one thing, and then an hour later at a press conference, the governor would say something else, providing conflicting information. Sometimes both of these statements would be different than the federal administration messaging at the beginning of the pandemic, so there was a lot of confusion, she acknowledged. Farrell emphasized that the main focus for her team is understanding how to get the message out and reach the most vulnerable, whatever that segment of the population may be for that disaster. NYC Emergency Management is also trying to balance cybersecurity needs with increasing reach and ease of access, such as how it can reach more people via popular platforms like WhatsApp and WeChat.

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¹ For more on the Public Health Communications Collaborative, see www.publichealthcollaborative.org (accessed July 10, 2022).

Discussion

A participant asked about the current communication challenges related to long COVID and what strategies are being used to address them. Castrucci added that even though there is not enough knowledge for public health officials to speak authoritatively, there are still many people saying that long COVID does not exist or is an exaggerated claim. This is similar to other health crises where public health is waiting for sufficient data to share messages, and in the interim other groups fill the silence with their own information. Castrucci cautioned that as professionals, we need to be clear that this is real and not made up, and it is a condition that can affect anyone. That messaging needs to continue to be shared repeatedly, he added.

Phillip Maytubby, deputy chief executive officer of the Oklahoma City County Health Department, said this is a wake-up call for all officials. “You can understand the data,” he said, “but if you can’t communicate it well and don’t know your audience, you will fail.” He noted that there are numerous companies that can help with analytics and polling and provide more insight on the data being collected. Koh replied that there is an opportunity for academia and public health schools to offer more risk communication classes and media training on how to communicate in crisis. Too many people have had to learn on the job, he added. He noted that media communications expertise and training can include mock press conferences or mock interviews on camera.

Castrucci also noted that spokespeople should be skilled in public health and commented on those sharing information on cable news that may have a public health degree but primarily work in health care and are not well versed in the public health needs and landscape. The problem with the schools of public health, he said, is that curriculums are not being built by people with public health practice. He argued for investment in training and expanding the minimum requirement for recruiting public health officials, beyond simply a medical degree.

Andrew Pavia of the Infectious Disease Society of America shared an experience where he was told by a producer of a national network that if you go on television and say, “We don’t have the answers yet but we’re working on it,” you won’t get invited back. In the future, he asked, how do we assure that the people who know how to communicate and know what they are talking about have the podium often enough to get the right messages out? Serino commented that it goes back to training, and people need to be given the chance to practice and learn how to communicate, even with a lack of certainty, using various scenarios. This should be taught in schools on a regular basis, he added, but this training is necessary right now, and we cannot wait for young people to come up through the work-

force. Those working in the field right now can benefit from training and opportunities to do this better. Castrucci also noted that the politicization of the landscape of communication has not been highlighted yet. From his experience with focus groups of different political affiliations, he noted that some were very alarmed by those supporting vaccinations and manipulating scenarios to fit the narrative they had developed.

Regarding trusted messengers, Ronald Stewart, chair of the Department of Surgery at the University of Texas Health San Antonio, said they have realized that this is a critical aspect of communicating. He recalled working with someone trying to reach certain segments of the population and realizing that the target audience not only lacked scientific literacy but also did not understand that science changes over time. Sell replied that as scientists, she and colleagues default to using science in language, but she suggested finding out what others care about and communicate with them in a way that reflects those values.

Bill Driscoll, Massachusetts state representative and chair of the Joint Committee on COVID-19 and Emergency Preparedness and Management, affirmed a lot of this discussion, agreeing that there has been media malpractice. Revisiting the question of what happened to the plans, he asked why the plans are not being updated with a more formulaic process. Crises and emergencies span both spheres of public health and emergency management, he said, and whether you are in public health or run a fire department, a leader needs to be able to deliver the same quality messages and know when the demand outweighs their skill set. He advocated for updating the plans with these fundamentals, because very painful lessons have already played out, and something positive should come of that.