Lauren Hughes opened the final virtual workshop in the workshop series by noting that the day’s presentations would focus on effective communication tools and informing evidence-based policy making. Karin Rhodes explained that historically, the Agency for Healthcare Research and Quality’s (AHRQ’s) role has been to disseminate evidence to health care stakeholders. It does this by synthesizing evidence from patient-centered outcomes research (PCOR) and across government agencies and then translating it and communicating it using various tools and decision support aids. AHRQ also helps practices implement evidence-based interventions into clinical practice and provides various training programs for clinicians. These activities are all consistent with AHRQ’s congressional authorization to support the dissemination of evidence into practice and train the next generation of patient-centered outcomes researchers. Based on its first 10 years of work and current administration priorities, AHRQ has established a small set of priority areas on which it will focus its investments. Those areas are prevention and improved care of patients with chronic conditions; improving patient and family and provider experience of care to enhance trust in the health care system; promoting high-value, safe care that is aligned with national health priorities, which can change over time; and primary care transformation.
Manisha Sharma, cofounder and chief strategy officer for CentiVox Media Group, began by explaining that one of the major barriers for communicating patient-centered outcomes effectively is that while the research and academic communities like to see practical uses of their research, those communities tend to limit communications regarding their research findings to the academic and research settings. This contributes to the current scenario of a large amount of data, science, and other information that is available but not always communicated effectively. Communities may be skeptical of the messengers who typically convey this information and who may not be the individuals that conducted the research. This skepticism creates opportunities for misinformation and disinformation to fill the resulting communication gaps and create confusion within the community. It also raises the critical question of how people perceive and receive communication.
Sharma explained that in 2020, during the height of the COVID-19 pandemic, Pew Research Center conducted a study to investigate which sources people were using to obtain news about the pandemic and the research being conducted to combat COVID-19 (Shearer and Mitchell, 2021; Shearer, 2021).
This study found that 86 percent of U.S. adults relied on digital sources, with Facebook serving as a regular source of that news for nearly one-third of U.S. adults. Sharma suggested that one barrier to progress is that the research community and the agencies that fund research frequently do not adequately engage with nonmedical and nonhealth audiences through the mediums they rely on for information. This is usually not within the confines of institutional walls or academic journals. Sharma, who is a board-certified family medicine physician, noted that frequently physician training conditions future physicians to place the responsibility of being well informed and health care literate on the consumer.
She explained that while there is a great deal of passion about conducting research that can advance health and health care within the research community, members of that community are unaware that the same passion exists among people outside of the traditional research community. Examples include community-based organizations, the patient advocacy space, and nongovernmental organizations. She noted that media platforms often rely on digital platforms and social media for information instead of journal publications or other sources typically used by researchers to communication findings. In addition, there is a generational change in how people perceive and receive news. While print media is still important for individuals aged 50 and older, digital media is increasing rapidly as an important source of information for younger U.S. adults (Shearer, 2021).
Sharma suggested additional efforts should be directed to train experts, starting in medical school and public policy graduate programs, in communicating longitudinally and outside of journal publications. She encouraged AHRQ to intentionally seek, prioritize, and fund researchers and research that are relatable, reliable, and effective. Her third suggestion was for AHRQ to build a diversity, equity, inclusion, and belonging workforce of people within the research community that includes people in leadership positions. She also suggested development of public relations strategies that include considering effective strategies for translating research by involving cross-sector collaborators who can help the communications department translate research findings into information that is meaningful to the target community or communities.
Monica Ponder, assistant professor of health communication and culture in the Cathy Hughes School of Communications at Howard University, began by explaining that some communities are in a constant state of crisis, which makes it challenging to communicate about health-related issues with them through the noise, unrest, and social inequities that are affecting those communities (Ponder, 2022).
Health communication, explained Ponder, is the science and art of using communication to advance the health and well-being of people and populations. It is a multidisciplinary field of study that brings together evidence, strategy, theory, and creativity to promote behaviors, policies, and practices that advance the health and well-being of people and populations. Health communication, she noted, starts by focusing on the physician–patient relationship.
She explained that the public health pyramid (Figure 11-1) illustrates that achieving an increasing population effect requires several levels of interventions on which to focus (Frieden, 2010). For example, while counseling and education may work at the individual level, population change and population effects require environmental and structural approaches to public health. She added that health care is a continuum. Therefore, the goal of health communication should not be to reach people at the point of diagnosis, but at the point where promotion of health and prevention of disease is possible. This includes addressing policy and environmental levers and shifting collective behavior before people reach a state of distress. It is important that communications reflect an ecological approach that includes both individuals and
health system partners. Communication efforts should also acknowledge that people are not only navigating multiple crises but are also receiving information from multiple sources that can intentionally or unintentionally counter the messages that health communication seeks to promote. Health literacy is an important tool to address these challenges because it gives people the capacity to obtain, process, and understand basic health information. Health literacy is important, she added, because low health literacy is linked to many adverse outcomes that burden both the individual and the health care system.
Ponder explained that communication can
- increase knowledge and awareness of a health issue, problem, or solution;
- influence perceptions, beliefs, and attitudes that may change social norms;
- advocate a position on a health issue or policy;
- increase demand or support for health services;
- refute myths and misconceptions; and
- strengthen organizational relationships.
There are structural issues, said Ponder, that communication cannot solve despite committed effort. This includes the ability to make sustained change or compensate for inadequate access to health care. Communications cannot produce sustained change in complex health behaviors without the support of a larger program for change, including components addressing health care services, technology, and changes in regulations and policy. She noted that communications may not be equally effective in addressing all issues or relaying all messages because of any of the following challenges: the topic or suggested behavior change may be complex, the intended audience may have preconceptions about the topic or messenger, or the topic may be controversial. She said the National Cancer Institute has produced a useful resource that explains what communication can and cannot do and provides examples of effective health communication approaches (National Cancer Institute, 2004).
Ponder said that when engaging in a communications project, it is important to center community voices in terms of their experiences and apply an ecological approach to understand social determinants and the structural elements that affect how people perceive and access information. It is also important for people to feel heard, that institutions are listening to them and that their input is valued. As an example, Ponder referred workshop attendees to visit the Project REFOCUS website.1
Dawn Hunter, the Network for Public Health Law’s southeastern region director, explained that her organization provides legal technical assistance, consulting, trainings, and resources to local, state, and national health agencies and organizations across the United States. Hunter and her colleagues work with public health leaders, policy makers, researchers, educators, advocates, and health care providers through no-cost legal technical assistance in the form of strategic consultation, knowledge building, research and analysis, and awareness building and connection.
Hunter’s particular areas of specialization are the use of legal and policy strategies to promote health and racial equity, the structure and governance of public health agencies, and civic engagement as a health equity strategy. Hunter added that budgets are an important policy tool because a budget communicates values. Communication combined with law can play an important role in fomenting advocacy that engages communities and builds political will. However, she added, the legal community would benefit from improving efforts around communicating about the role of law and policy in shaping health outcomes.
Hunter said that there are many ways to use research, data, and storytelling to inform, persuade, and move people to action. The first part of this process requires engaging people around issues that reflect their priorities, understand their data needs and research priorities, and educate them about how a law or policy action could specifically affect them. The next step is the process of equipping people with the tools to engage with policy makers. That includes providing people with information and training them on how to use it effectively to mobilize around the community’s priorities and take action. Examples of key mobilization actions, Hunter said, include contacting legislators, writing opinion pieces, working with a newspaper or news outlet on a story about a health issue in the community, or going to city council meetings. Then the effect of this work should be evaluated and the lessons learned applied to future efforts.
Hunter explained that there are other approaches to affect state-level policy through the legislative process. The process of drafting legislation is influenced by available research and data. This data is usually delivered by businesses, lobbyists, executive agencies, community advocates, and researchers, all of whom are communicating about something that is a priority to them. Her organization’s recent survey of legislative trends over the last two legislative cycles found that almost every state has introduced a bill that affects health or racial equity. Trends that proposed legislation encompass include continuing efforts to address racism as a public health crisis or emergency,
addressing educational inequities, prohibiting teaching of divisive concepts in schools, improving racial equity in state agency employments, data collection and use, and provider education and training. Other legislative trends were providing the infrastructure and funding to conduct health and racial equity work; addressing equity in birth outcomes, maternal, and child health broadly; and using racial equity or health impact statements in policy making. This last trend, said Hunter, is informed by the evidence on the need for conducting those types of assessments and in using evidence to conduct the assessment itself.
Hunter described examples of how the Five Essential Public Health Law Services framework connects with the AHRQ strategic framework to guide PCOR investments (Figure 11-2). Access to evidence and expertise informs needed policy changes, while expertise in designing and selecting legal and policy solutions enables disseminating evidence to health care decision makers. Implementing, enforcing, and defending local and national policy solutions will accelerate the uptake of evidence into practice and policy surveillance, Hunter said, and evaluation will tie into building data measurement and analytic capability. Hunter concluded by emphasizing the following: there are many ways to affect law and many types of law to affect, it is important to develop a multifaceted legal and policy approach to advance health equity, and strategic advocacy and communication are useful means of changing law and policy.
Tailoring Communication for the Audience
Session moderator Cara Nikolajski posed a question from audience member Grace Scharf, New York City Health and Hospitals, that asked the panelists for suggestions on how to ensure that people who are not fluent in English or those confronted with misinformation can access good information from reliable sources. Ponder replied that a lesson from the REFOCUS project was that ethnicity-specific media platforms are trusted sources of information, and many of those outlets work in the preferred language of marginalized groups. During the COVID-19 pandemic, those platforms were particularly effective at contextualizing health issues and larger issues around the societal, environmental, mental health, and financial effect of the pandemic.
Hunter suggested focusing on the system perspective rather than the consumer perspective. She suggested considering the legal obligations of the health department and other health care organizations to provide information in the languages spoken commonly in the community. She added that a proactive approach to hiring translators and interpreters and issuing communications that are accessible to the community is also important, as well as efforts to help people understand what reliable information is.
The next question asked the panelists to discuss the steps they take when creating health-related messages for target populations. Sharma replied that health care professionals are instructed to avoid using jargon when speaking to patients, but they are not provided instructions on how to do so. This is an area that could be better addressed during provider education and training. She added that speaking to nontechnical people requires talking with humanity, kindness, and grace, not by shaming them, and Sharma mentioned a YouTube channel from Grapevine Health as a place where academics and clinicians can find some lessons for communicating with people outside of their silos.
Ponder recommended the Pink Book2 from the Centers for Disease Control and Prevention and the National Institutes of Health as a tangible source of advice. The Pink Book is a colloquial name for a long-standing, trusted resource that includes a step-by-step cycle for how to design a health communication program (National Cancer Institute, 2004). She noted that people in the targeted community will provide insights into what they need to hear and how they need to hear it. Hunter added that her organization’s Becoming Better Messengers training, based on Moral Foundations Theory and developed
2 See https://www.cancer.gov/publications/health-communication/pink-book.pdf (accessed September 15, 2022).
based on further research by Burris et al. (2019), starts with understanding the values with which people resonate and the target audience’s beliefs and practices, because effective messaging should reflect what people value and what they want to hear (Haidt, 2012). Another good starting point, she added, is to focus on helping people understand how they can engage in a desired activity or take in information.
Considering Community Communicators
Jen Brown asked the panelists to speak about the role of community media and how AHRQ could support researchers to engage with community media. Ponder recommended connecting with journalism advocacy groups such as the National Association of Black Journalists and the National Association of Hispanic Journalists for help making connections to community media. The local health department can be a good source for identifying the important communicators in a community. She also noted that there are many citizen journalists and scientists who are trusted within social spaces and within their community. Those individuals have invested in developing reputations in their community for being a reliable resource of information. It is important as well not to stigmatize or ignore people who may not be “traditional” journalists and work in the digital space but who represent particular communities. In the mass media, there are journalists—for example, science writers or members of the Association of Health Care Journalists—who cover subjects in a culturally and ethnically sound manner and who can write about technical subjects in lay language.
Nikolajski asked the panel to discuss strategies for engaging with community leaders to serve as trusted messengers. Sharma explained that this requires building relationships with those trusted community members and learning how best to engage their expertise. Hunter added that relationships with leaders in the community should be developed proactively. Additionally, health researchers should seek to provide those community leaders with tools and the support to lead conversations instead of leading every conversation themselves. Ponder agreed with Hunter and added that this is an effective approach for empowering community leaders and communities. She added that effective engagement with community leaders requires active listening.
The group was next asked to discuss metrics or outcomes for assessing the success of a health communication or health policy initiative or campaign. Hunter said the legal epidemiology framework can be useful for determining how laws affect population and for identifying how specific components of a
law affect different health outcomes (Burris et al., 2016; Ramanathan et al., 2017). Sharma said that researchers should be thoughtful about the community they will be engaging and avoid trying to fit all demographics and geographies into one measure. Ponder added that community input is also important when developing measures and suggested using more nontraditional and less quantitative metrics to supplement and complement ongoing work.
Hunter explained that organizations working in a state that has performance-based budgeting are often required to report on measures that are negotiated with legislative analysts and a committee and that may not represent information that is useful for the community. This can result in reporting on a measure for the purpose of meeting a requirement rather than for determining whether a communication effort was effective. She also noted the importance of supporting and engaging the workforce to support the design of measures that do not interfere with workflow.
Considering Levels in the Social Ecologic Framework
Nikolajski asked Ponder to comment on whether there are particular levels in the social ecological framework she discussed that AHRQ should focus on in its health communication strategies. Ponder replied that this varies depending on the goals of a project. In some cases, the work may be most meaningful and effective at the clinician and patient level. In that case communication strategies should focus on collaborating with health care advocacy groups while also ensuring that the work strengthens relationships and provides educational supports. She noted that some issues may be structural, which may involve a different approach that requires more partner-to-partner and institution-to-institution engagement and investigating opportunities to engage policy levels. In instances of public resistance to a message, efforts should be directed at the interpersonal and community levels. One useful exercise is for a team to consider each level in the public health pyramid to develop their communication strategies.
Sharma added that the levels can change, and she would like to see agencies such as AHRQ start investing from the ground up rather than funding big institutions all the time. There are many physicians and nurses, she said, and people with lived experiences who are dynamic communicators and are relatable, reliable, and trusted messengers that are communicating through social media but who are not at a big academic or governmental institution. Hunter noted that local, state, and federal health agencies often have multiple levels of approval for communications. She encouraged research funders to consider how to design flexibility into their communication systems. She noted that during the COVID-19 pandemic, there have been instances of public health
departments funding community media partners to establish a more flexible system for communicating with the community.
Nikolajski next asked the group to address strategies and opportunities for using technology to effectively communicate public health or public policy information to diverse audiences. Sharma replied that the academic and research community would benefit from increased engagement with digital media platforms. She noted that usually professionals in medicine or science are viewed as experts based on the frequency and quality of their work that is published in scientific journals. However, in order to improve communication of health care research findings, these professionals should also be expected to develop skills in communicating their findings in other settings, such as radio, television, or social media. Ponder remarked that digital tools are an important partner for ensuring information is accessible. This requires researchers to engage in thoughtful communication strategies to ensure information is shared via accessible sources.
Hunter noted that social medial can be a useful tool for communicating health information as well as health care policy related information. She suggested that in order to ensure that accurate information is disseminated, those with expertise should have a presence on social media. She said that these experts have a role in helping people understand the implications of law and policy decisions related to health care for their community.
Training Future Professionals
An unidentified audience member asked the speakers to discuss strategies for integrating these lessons into the education and training of health care professionals and patient-centered outcomes researchers. Sharma suggested that those lessons should be integrated into academic training and incorporated throughout the education process instead of isolated in a single course. Ponder agreed that health communication skills should be incorporated into the academic preparation of all health care and PCOR professionals. She also suggested that researchers could improve the effectiveness of their communication plan by engaging with a health communications professional during the early phases of development of an intervention. She noted that communication training in a project should be considered a structural investment that will generate long-term benefits.
Hunter suggested creating a legal infrastructure to support or require training. She explained that possible approaches to create such a policy include
establishing licensure requirements and perhaps a community advisory board with specified duties and responsibilities codified in a legal or policy mechanism that also includes funding. Sharma added that it is important for licensing boards to hold professionals accountable for providing accurate information and not contributing to misinformation or disinformation. Hunter noted that institutional practices should incorporate professional codes of ethics.
Final Thoughts from Speakers
As a final question, Hughes asked the panelists for one message they would give to AHRQ about communications. Ponder said that given that AHRQ’s work has broad impact, it would be beneficial for the organization to consider the motivations and implications of their work at all levels of the health care system as well as the communities in which their work is being done. Hunter replied that intervention teams should be intentional in their approach to disseminate information in the community setting as well as the partner engagement piece of their project, whether that is with health care professionals, researchers, or community members. She emphasized the importance of developing processes that facilitate bidirectional conversations with stakeholders to gain feedback regarding existing projects and identify future research priorities. Sharma emphasized the need to seek diverse leaders, which may require considering experts outside their professional networks.