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Research Translation and Communication

In addition to needing increased quantity and coordination of pharmaceutical interventions and research, several speakers highlighted the need for researching nonpharmaceutical pandemic measures and translating that research to the general public. Increased collaboration between communication, science, policy professionals, and health care workers will be necessary to ensure the right information is reaching the right populations. This chapter reviews research of nonpharmaceutical interventions (NPIs) and their effectiveness, presents various strategies for delivering clear communication and information sharing—to avoid navigating with misinformation—and discusses the importance of context in these situations.

RESEARCH OF NONPHARMACEUTICAL INTERVENTIONS

Benjamin Cowling, head of the Division of Epidemiology and Biostatistics at The University of Hong Kong, explained that NPIs can be categorized into targeted measures and community-wide measures. Interventions such as isolation of infected individuals, Cowling continued, are beneficial because they target key individuals without disrupting the whole community. However, it is not always easy to understand who these are—for example, who has been exposed or infected—which requires a lot of testing. Additionally, there are issues related to equity. For instance, if an individual is mandated to quarantine, who is responsible for paying for their loss of income? Countries have been approaching this in many different ways. Community-wide measures include mass masking, reducing crowds, school closures, or working from home. Cowling explained that Japan’s message

of the “three Cs” during coronavirus disease 2019 (COVID-19) has been very clear and effective: avoid closed spaces, crowded places, and close contact.

One key example of a community-wide measure that needs further research for a potential influenza pandemic is school closures, Cowling said. While different for COVID-19, “for most respiratory infections [such as] influenza or common colds, children tend to be the most susceptible to infection and the most responsible for spreading infections in the community, more so than adults.” He noted that further research and analysis is necessary on which specific interventions related to school closures were effective, such as closing schools, half days, and Zoom classes. These should be investigated now so that these measures are clear for the next pandemic and children can bear as little burden as possible.

BEHAVIORAL SCIENCE

Sherine Guirguis, director at Common Thread, noted enormous levels of investments in biomedical research, but not enough effort focuses on understanding people and the choices that they make. Despite tremendous improvements during COVID-19, more research in behavioral science is needed to create systematic and effective interventions that target behavioral change, she argued. More specifically, social sciences, behavioral sciences, and behavioral economics contribute a lot to understanding the reasons behind vaccine hesitancy. Cowling gave the example of vaccine hesitancy in Asia that resulted from the tremendous success of NPIs—because case numbers in several countries remained so low, people were not as proactive about getting the vaccine. This challenge of vaccine hesitancy, he added, can be addressed through proper communication and interventions informed by behavioral science.

Additionally, Priya Bahri, principal scientific officer at the European Medicines Agency (EMA), noted that behavioral science can be tremendously helpful for regulatory bodies when assessing the success of their communication strategy. Bahri explained that regulatory bodies such as EMA have not traditionally focused on social sciences to understand the impact of their work but are now starting to do so. She noted that behavioral science can help regulatory bodies respond more effectively to a changing environment, such as that of COVID-19.

CLEAR COMMUNICATION IN A PANDEMIC

Bahri noted that organizations must have clear and consistent messaging to allow the public to make informed decisions. However, she cautioned against the idea that all organizations should have the same message, not-

ing that entities have different communication goals and legal mandates. For example, some pharmaceutical companies might not be able to state certain ideas because it might be mistaken for unnecessary advertisement. In contrast to private vaccine manufacturers, public health agencies aim to inform the public of a risk–benefit ratio for medications so that physicians and the public can make the best decisions. Bahri said that instead, different organizations should aim for a consistent overarching idea that informs and does not confuse the public. Heidi Larson, founding director of the Vaccine Confidence Project at the London School of Hygiene & Tropical Medicine, cautioned that an overemphasis on delivering the same message might seem as if it is being “choreographed” and could lead to hesitancy. Sarah Zhang, staff writer at The Atlantic, stated that the role of the media is also to inform rather than persuade the public. Bahri, Larson, and Zhang emphasized that consistency and a clear and unified goal within communication is important but also highlighted the importance of giving space to different voices. Zhang agreed that it is dangerous to portray extreme binaries in media, oversimplify complex ideas, or show a consensus where there is none, especially during a changing emergency situation, such as the COVID-19 pandemic. Instead, she said that transparently explaining “the true range of likely possibilities” and informing people to help them make the best choices would lead to better results and increased trust. Tolbert Nyenswah, senior research associate at Johns Hopkins University, added that being transparent when public health officials do not know, rather than giving false or misleading information, is vital to gaining people’s trust. This honesty can be especially difficult in an emergency outbreak with so much unknown about a pathogen, Nyenswah explained. Furthermore, the people’s trust can be gained when policy makers communicate information supported by science.

To achieve clear and consistent communication with the public, organizations must use consistent terminology, Bahri continued. For example, she noted that experts have used the term “herd immunity” to mean different concepts, creating confusing and inconsistent messages. Especially when the public has been confronted with many new public health concepts during COVID-19, the need for epidemiological literacy is even greater, she said. Increased awareness of different epidemiological ideas will empower readers and allow them to filter out unreliable sources and “fake news.” Zhang highlighted another unclear scientific message in the media, describing how the phrase “there is no evidence for” has been used inconsistently. No evidence could exist because the information has been refuted. However, no evidence could mean simply that the research has not been conducted yet. For example, during the COVID-19 pandemic, Zhang recalled messages of “there is no evidence that masks work” or “there is no evidence that vaccines prevent transmission” that were meant to say that

the research did not yet exist. However, journalists used the phrase with unclear intentions and created confusion, resulting in a narrative that masks are not effective. Bahri agreed regulatory bodies need to better inform the public that “absence of evidence and evidence of absence are not the same thing.” She noted that this distinction is particularly important with new and developing vaccines, because of the ongoing accumulation of evidence and because the risk–benefit profiles of each intervention have different levels of evidence.

Involving the Media

Several speakers also voiced concerns over predictive public health messages and news coverage that attempts to highlight unique and interesting stories. First, Cowling cautioned against giving the public recommendations or predictions too early, before scientific evidence supports these statements. For instance, he was concerned when private vaccine manufacturers began announcing that COVID-19 vaccine boosters will be needed, explaining that it is still too early to know with certainty and that he suspected these manufacturers might have vested interests in distributing booster doses. Another cautionary example was telling the public that all vaccines are equally effective, despite no clear evidence to support which vaccine would have broader or longer protection, he said. Similarly, Zhang advocated against media coverage that attempts to highlight novel and unexpected cases. Although these stories are interesting and should be included in the news, concentrating mainly on exceptions might fuel vaccine hesitancy. She explained that to avoid misrepresenting statistics, journalists should find ways to report on typical cases in interesting and creative ways that capture readers’ attention just as much as dramatic exceptions do. Zhang proposed that instead of covering the latest headline every day, journalists should “take a step back and think about what the importance is in the bigger context.”

Several speakers also noted that the media has played a key role in the conversations about COVID-19. For example, Guirguis explained, for previous vaccines across a range of health areas, the media was used to increase overall awareness, but the scientific and health conversations were mostly between patients and their doctors. During COVID-19, however, specific conversations have been held in very public spaces. While Guirguis noted that this has made information more accessible and transparent, the public has been involved in conversations that are sometimes too detailed, confusing, and disorganized, leaving them to decide important medical interventions on their own. Sorting out a clear and unified message and “pulling apart what tools to use in which context” would be helpful for individuals trying to decipher many streams of information. Similarly, Zhang added the

importance of social media and highlighted the need for journalists to be aware of messages that are circulating on different platforms.

Battling Infodemics

Sergio Cecchini, coordinator of the Africa Infodemic Response Alliance (AIRA), agreed that social media has played an important role in the infodemic and stated that stories related to COVID-19 have been viewed 230 billion times on social media. Cecchini also noted that this was the first time that such a large amount of medical content has been available to the public, followed by an unprecedented wave of misinformation. To better cope with the infodemic, he continued, organizations should use social listening, something that the private marketing sector has employed to better understand where rumors begin, how they spread, and how to debunk them. An example of an organization that has used social listening, Cecchini noted, is AIRA. They have found that there are higher rates of vaccine hesitancy in parts of Africa that also have lower Internet access. To inform a stronger response to this infodemic, WHO held a seminar with contributions from more than 1,300 experts to define a framework to guide interventions. Discussions highlighted the importance of mixing macro and micro influencers at local, national, and regional levels and identified four pillars to guide an infodemic response (WHO, 2020):

• Identify the rumors.
• Simplify the response.
• Amplify the message to be shared on a local and national level.
• Measure the impact of the interventions.

However, Glen Nowak, director of the Center for Health & Risk Communication at the University of Georgia, cautioned that the public space has so many messages and most of them are not impactful, so it is insufficient to only track an infodemic and create a counter-message. Because most people are inundated with advertisements, they tend to ignore messages and to not care as much about them as public health officials assume they do. Bahri noted that regulatory bodies would especially benefit from understanding which messages “catch attention” and which ones go unnoticed. Nowak also called for increased collaboration between communication, science, and policy professionals so that when public health recommendations are released, they can not only withstand theoretical and scientific criticism but also be realistic and be functional “in the operational space.” On the other hand, he also cautioned against concentrating only on communication when there is lack of scientific consensus or effective policies. Nowak suggested that a better communication strategy could be talking to people

and understanding how they perceive medical recommendations, leading to more meaningful impact than simply trying to insert messages from an organization directly into social media. Discussing issues with people directly is a better way of understanding communities, gathering data on how outbreaks impact their lives, and offering them correct information, he concluded.

In addition to communication with the public, officials should also focus on communication strategies targeting health care workers and other leaders, who would then be able to have effective discussions with individuals from the community, Bahri noted. Bahri said that EMA received feedback after the H1N1 pandemic that physicians felt insufficient material focused on helping doctors communicate with their patients and more communication was focused on the public. Bahri said that communication between individuals and physicians is a vital part of being informed because most people trust their doctors, who can play a crucial role in being able to navigate among the multiple voices. Similarly, Nyenswah also said that primary health care workers are key to reaching rural or disadvantaged communities. Engagement in the community can also be achieved through community health workers, added Patricia García, professor at the Universidad Peruana Cayetano Heredia.

Building Community Trust

Denise Gray-Felder, president and chief executive officer of the Communication for Social Change (CFSC) Consortium, also echoed the need to focus on leadership and stated that a consistent and trusted spokesperson, such as Anthony Fauci in the United States, has been an important asset in ensuring ongoing, open communication. However, she called for further efforts to establish a trusted leader in smaller communities in the United States and worldwide. Such an individual must come from the community, nationality, and background of the people that they are trying to reach, Gray-Felder and Nyenswah said. Gray-Felder explained that individuals who are distrustful of scientific information and do not have a scientific background are much more likely to believe information from a person they know than from a distant public health official. As an example, she said that the role of church leaders has been especially important during COVID-19 in North America and Europe. Nowak agreed with Gray-Felder in that community leaders should be representative of the population, adding that it would be useful to sometimes pick leaders who live in a predominantly vaccine-hesitant community; these would be great influencers if officials could get them to endorse vaccines, something that is not always easy to achieve. Similarly, Cecchini explained that AIRA has used the support of lo-

cal TikTok influencers to penetrate the social media space with visual images that increase health literacy.

Nowak also commented on leadership during an emergency, noting that prior to COVID-19, public health officials assumed that politicians will always take their recommendations on which health-oriented decisions to make, but this has not been the case. He called for public health professionals to better understand governmental choices and public health responses from a political perspective to achieve better collaboration. However, Guirguis clarified that trusted leaders who disseminate public health messages can be from different backgrounds, depending on the local community. She warned against generalizing that people trust primary health workers, or religious leaders, etc. Instead, she said, each local community is different and public health officials should understand the dynamics of each when disseminating health messages. Finally, Guirguis added that trust takes time to build up and leaders cannot suddenly emerge in an emergency. In fact, she explained, “trust is eroded when people you’ve never seen before, suddenly show up out of the blue and start giving you unsolicited advice about how you should make decisions that affect life and death.” This was seen during the 2014–2015 Ebola outbreaks and previous polio campaigns, she said. Instead, leaders and public health officials should make a sustained effort to engage with communities and build trust in advance, Bahri said.

Gray-Felder expanded on the theme of engaging communities, noting that from her experience, she has observed “the tendency [of public health officials] to push more than to pull information” in times of emergency. However, Gray-Felder emphasized that consistent two-way communication is important to gaining long-term trust within a given population. For example, she explained that public health officials need to listen to citizens’ explanations regarding vaccine hesitancy to truly understand their reasons and address their concerns. Bahri agreed with Gray-Felder that listening is an important aspect of communication that often gets left out of efforts. Bahri also added that although it is not traditionally part of regulatory responsibilities, monitoring real-world impacts of regulatory actions is becoming an increasingly important part of regulatory self-assessments. For instance, Bahri said that EMA is collaborating with academia to assess the effectiveness of their communication, especially using behavioral science.

EQUITY IN RESEARCH AND COMMUNICATION

When thinking about two-way communication with people, hard-to-reach communities should also be a priority, Guirguis said. She noted that seasonal migrant workers, minorities, displaced populations, and refugees are often left out of public health communication and research, either unin-

tentionally or even deliberately. Nyenswah added that a community-based participatory approach is a good tool to help gain such populations’ trust and help them be more involved. Guirguis also cautioned against confusing “people who are hard to reach” with “people who are hard to vaccinate.” In the former, there are supply-based gaps and public health officials logistically may not be able to access certain individuals. In the latter, public health workers can reach someone but are unsuccessful in their goal of administering proper treatment for various reasons. While the former is a problem of supply, the latter is a problem of demand. The distinction between the two is important because understanding the problem would allow public health officials to better know where and how to invest time and resources, Guirguis noted, adding that it is vital for research to not exclude minorities from studies.

Researching and understanding the target population allows public health officials to tailor their services to the needs of specific groups. Guirguis highlighted that a majority of people can only be reached if the services were designed for them and with them in mind. To truly tailor interventions to disadvantaged communities, Nyenswah said that researchers, service providers, and community members need to collaborate. García agreed, giving the example of research in Peru using convalescent plasma. She noted that Peru did not have an existing culture of donating blood, so different sectors (media, researchers, policy makers) had to collaborate to inform the public about the community benefits. Guirguis also agreed, describing how her organization Common Thread treats research participants as partners and collaborators instead of subjects. She focused on the importance of allowing communities to “take [the research] data and act on it and design their own solutions and decide on their own priorities.”

Despite differences between cultures, some overarching values connect people globally and would be beneficial to public health officials to use as they create interventions, Bahri noted. She explained that one such value is that people want the best health for their families, children, and communities, but how they achieve and perceive this differs depending on culture. “Fundamentally, people want their health services to [represent their values and] reflect the communities that they live in,” Bahri stated, with agreement from Guirguis. When aiming to achieve this, Bahri continued, public health officials should consider communication and design of interventions as key; how public health officials design an intervention or a health service always communicates a message, such as offering services only from 9 am to 5 pm, creating a vaccine vial only in a certain language, or staffing a clinic with only people from a specific gender, ethnic, or racial background. These things are noticed. Bahri stated that it is important to recognize that communication is not only what is said in the media but also what is done

in clinics and public health offices. Creating and maintaining an environment of trust within a community is paramount. García highlighted that if public health officials do not have “equity in the middle of everything that we do, it will erode trust.”

UNDERSTANDING THE IMPORTANCE OF CONTEXT

Another overarching theme that emerged from the speakers was the need for contextualization. When communicating governmental decisions, a few speakers noted that the public needs to be informed of the context and reason behind interventions. Similarly, when stories in the media are placed in context and real emotions and people are described, the message can be shared more efficiently. Finally, when aiming to change behavior, interventions should take into consideration the local sociopolitical and cultural context, said Guirguis.

Contextualizing numbers and reporting using emotional stories are key when trying to communicate information through the media, Zhang noted. For instance, journalists had to convey that travel was not advised during the winter holidays due to COVID-19. Instead of stating that “doctors and hospitals are overwhelmed again,” she highlighted a story written by Ed Yong, another staff writer at The Atlantic, about a specific hospital in Nebraska. It was emotional and effective in communicating the importance of not traveling. However, emotional reports “can also backfire,” Zhang noted. For instance, a specific story about side effects from a COVID-19 vaccine would have much more impact than a journalist stating only numbers. Contextualizing very large or very small numbers is important so that readers can understand the actual significance of statistics, she explained. Data journalism and visualization of numbers have been very helpful in putting statistics into context for readers, Zhang said. Guirguis agreed with Zhang on the importance of bringing facts and narratives together to paint a clear image. Guirguis explained, for instance, that if the public is given a risk for blood clots from the COVID-19 vaccine without any context, people very likely will not understand what that risk is comparable to. She explained that the need for increased health literacy within the general population, which would lead to a better understanding of how vaccines work and the risk–benefit calculation that is made for any medical intervention, such as birth control pills. Finally, Larson added how difficult it is to bridge the micro and macro contexts when communicating with the public regarding negative side effects. For instance, it can sound insensitive to say that “the [vaccine] system is working and these [side effects] are normal” when people have relatives who have been adversely affected.

Contextualizing Government Decisions

To communicate the context behind governmental decisions, Bahri noted that broader methodological and risk governance topics need to be addressed when targeting the public because data need to be translated into meaningful evidence. For example, EMA conducted a 3-month study on news media communication in relation to the human papillomavirus (HPV) vaccine. Initially, questions from the public were more basic and related to the number of cases, safety concerns, and frequency of side effects. However, later in the study, Bahri highlighted that deeper questions related to methodology came up: What methods do these regulators actually use? Are these methods robust? How do they ascertain their cases? How do they calculate frequency? Is there underreporting? Later, even broader questions related to risk governance were asked: How do we avoid conflicts of interest and maintain public interest? How do we govern the industry? In response to these increasingly complex questions, EMA began including contextualizing explanations in its outcome documents, leading to positive feedback from the journalist community, Bahri reported.

During the changing environment of COVID-19, EMA also aimed to provide context behind decisions and available treatments. For instance, Bahri said that EMA prepared contextualizing information for the vaccine for the public even before it was available. Giving insight into the decision-making process creates meaningfulness behind interventions, Bahri explained, adding that this is the main area where regulatory bodies need to improve. One challenge during COVID-19 is providing this same contextualization during changing, uncertain, and ongoing assessments. Regulatory bodies should accept that “preparedness plans will not be complete” and flexibility is needed to cope with a changing context and maintain situational awareness, Bahri said.

Another suggestion that Bahri offered for regulatory bodies was to have a system of checks and balances when making decisions in a changing context. This will lead to more trustworthy decisions because multiple areas of expertise and perspectives are involved. She highlighted the importance of fostering a system based on trust within communities so that a future pandemic can better deal with infodemics. Similarly, Nyenswah noted that research scientists should communicate the benefits, reasons, and context behind the research with the community to build trust. Nyenswah added that it is vital for public health official and health care workers to address concerns of people so that they have trust in their leaders and in the medical interventions presented to them.

Understanding Behavior Change

Providing context behind behavioral change efforts is also important, Guirguis noted. Many public health interventions that aim to promote health around the world require people’s cooperation and compliance. However, people’s behavior and the decisions that they make are “either forgotten or they’re an afterthought or they’re perceived to be just really, really complex and [an] obstruction.” Guirguis noted that to create effective interventions, public health officials need to understand why people make the seemingly irrational decisions that they do and how culture and context plays an important part in the decision-making process. For instance, COVID-19 pandemic featured many messages of solidarity in the United States, such as “we are all in this together.” However, this message was not perceived well, she said, potentially because the United States, like many other Western cultures, has an individualistic culture that values personal freedom over collaboration and compromise for the greater good. However, such a statement could be effective in countries like China or Singapore, which have a more collective mindset. Another example of the critical nature of context was that of differing priorities between public health officials and the community. Public health officials should understand that someone’s priority might not be preventing disease if they are suffering from severe poverty, Guirguis stated. To create effective interventions that prevent disease, public health officials should understand the holistic needs and priorities of a community and deliver on a broad package of health that incorporates all of its priorities, she added. The difference in uptake of messages and interventions exemplifies that interventions can never be fully generalized on a global scale but should always be tailored to the culture of the region, Guirguis concluded.

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