Communicating with the Public
One purpose of a surveillance system is to generate information to better protect the health of all affected populations by improving the organization and delivery of health care services (see Chapter 6 for a more detailed discussion of this issue). However, timely and reliable data collection and analysis is only one measure of an effective surveillance system. According to David Abramson, the success of surveillance and monitoring activities is also dependent on how results are communicated to the affected populations and incorporated into public health practice. This chapter explores strategies for engaging the public in risk communication. These strategies include identifying the most critical needs of affected populations, involving the public in surveillance-system and research development, and communicating to a vast array of stakeholders credible, reliable, and actionable data that account for cultural, language, technological, and geographic barriers, as well as varying levels of health literacy.
Focusing on the topics listed above, Abramson delivered a presentation on strategies and considerations to engage the public and protect the health of affected communities. He also provided personal recommendations for moving forward. Following his presentation, Mike Magee moderated a discussion with the audience, designed to generate feedback about the types of exposures and uncertainties of greatest concern to the public. The discussion also focused on current research and surveillance activities that could inform the design of a larger surveillance system. At the planning committee’s request, four representatives from local communities provided remarks during an open-dialogue session. Members of the audience were also invited to comment on any aspect of the Gulf oil disaster.
ENGAGING THE PUBLIC, PROTECTING THE HEALTH
David Abramson, Columbia University
Decision making is the ultimate ambition of risk and health communications, according to David Abramson, and can be described in terms of information push and pull. From the policy maker’s or public health practitioner’s perspective, risk communication is designed to “push” information that encourages behavioral change or action that reduces known risks. From the public’s perspective, risk communication activities allow communities and individuals to “pull” information that influences short- and long-term decision making. Abramson explained that town hall meetings provide opportunities for the public to request information that guides specific actions. For example, one individual at a recent town meeting asked whether to conduct baseline soil testing on personal property to document potential damage if an insurance claim should be filed.
Abramson stated that his presentation’s three goals were to consider: (1) what influences perceptions, dissemination, and comprehension of health and risk communication by a variety of populations; (2) what vulnerability means to risk communication and how it influences what threats are perceived as most prominent; and (3) options for communication strategies that account for variations in culture, literacy, and other factors that define high-risk populations.
Influencing Health and Risk Communication
Health communication is not risk communication. Health information, which includes economic information, is geared toward social marketing and long-term behavior change, whereas risk communication draws on “emergency broadcasting” methods to elicit an immediate response, stated Abramson. Thus, variations in risk and health communication effectiveness may depend on different factors. For example, lack of attention or awareness may weaken the impact of health communication messages. On the other hand, risk communication messages are more vulnerable to fatigue, which can result from conflicting messages or dismissal if people do not perceive themselves as being part of the at-risk group.
Abramson cited a long line of science and scholarship on risk communication that can be used to inform communication strategies. For
example, one study investigating how attention to risk and health communications vary by population found pronounced differences between Pakistani, Orthodox Jewish, Chinese, Jamaican, and Caribbean populations even within the same region. Table 4-1 lists key findings of several recent National Center for Disaster Preparedness communications projects.
A number of general factors can influence perceptions of health and risk messages. First, the public must trust both the message and the messenger. In the aftermath of Hurricane Katrina, Abramson explained, many residents developed a significant mistrust of authority and the insurance industry. As a result, it is important to carefully select messengers that the target population recognizes as trusted organizations or figures. Additionally, the message must be understandable. Currently, the majority of graphics and data used by the media or policy makers for public communications only use one or two variables. In the context of the oil spill, information may include multiple variables, such as race, occupation, exposure, socioeconomic status, or language. Abramson described some recent projects that have trained practitioners and policy makers to use complex data to target interventions (e.g., “radar charts”) and suggested that the same strategies be used to communicate to the public about disaster preparedness and response. However, said Abramson, communicating with the public also should account for levels of overall health literacy in addition to ease of data interpretation and comprehension.
There is also a question of whether it is productive to include a sense of immediacy in the message. Abramson explained that, in recent focus groups, approximately one-half of individuals interviewed did not want a message to scare them, but the other half felt that alarm was necessary to trigger action. However, Abramson questioned the wisdom of using fear to motivate populations that are ill equipped to adequately respond to the message due to circumstances such as limited economic resources.
TABLE 4-1 Results of Recent Communications Studies
Applicable Findings or Activities
The American Preparedness Project examined attitudes, behaviors, and health practices in the U.S. population.
Eighty to 85 percent of the population sampled considers the U.S. Centers for Disease Control and Prevention to be a highly trusted health authority.
The Elusive Communities Project explored how undocumented Mexican immigrants respond to health communication strategies post-H1N1.
Community-based organizations play an important filtering role in risk communications.
The Ready New York Campaign focused on evaluating the attentiveness of communities to risk and health communication.
Different ethnic populations respond differently to risk communication messages.
Community Cells and Circles studied mechanisms for allowing rapid two-way communication with high-risk or at-risk populations (i.e., HIV/AIDS, Harlem teenagers, homebound, and undocumented immigrants).
Preliminary results demonstrate how a range of both old and new technologies can be used effectively to communicate information.
The Gulf Coast Child & Family Health Study is a longitudinal cohort study involving more than 1,000 families in Louisiana and Mississippi.
Recovery has occurred at a variable rate in the Gulf, often contingent on access to resources and restoration of social systems.
The American Hotspots Project uses geospatial intelligence and social data to measure public health preparedness.
Data-driven decision making can be enhanced by graphical tolls that allow for the display of complex social and geographic data.
Vulnerability and Evolving Threat Saliency
The unique vulnerability of a population also can affect how communities interpret messages about health or risks. Abramson defined vulnerability as a “predisposition to higher risk,” which may include physical, psychological, social, or economic vulnerabilities. As discussed
by Maureen Lichtveld (see Chapter 2), the Gulf population is uniquely vulnerable to adverse health effects from the oil spill and its related activities for a variety of reasons, including high rates of poverty, poor education, and exposure to multiple disasters. As noted above, vulnerable populations, such as those with physical disabilities or limited economic resources, may be more likely to view informational messages as frightening if they are unable to respond to the information provided. Additionally, concern over disclosures of personal information (such as HIV status or immigration status) may prevent some individuals from acting on information included in the messages. Abramson also noted that families often make decisions based on the most vulnerable person in the household. Thus, even if the majority of household members are capable of taking recommended action, they may be constrained by the capabilities of the most vulnerable member of the family.
Finally, retraumatization may affect how communities respond to risk and health messages. Because of recent exposures to situations stemming from disasters such as Hurricanes Katrina and Rita and recent floods, populations may experience increased susceptibility and decreased resiliency in response to the Gulf of Mexico oil spill. Moreover, Abramson explained that Gulf residents were tiring of having the Gulf oil spill compared to Hurricane Katrina because it forced them to relive traumatizing experiences that had been left in the past.
Health and Risk Communication Strategies
Certain principles should guide strategies for effective health and risk communications. First, one-way communication has limits. Abramson stated that communities want their voices heard. If the message incorporates input from local residents, then communities will be far more receptive to messages from trusted sources. As such, communication strategies should include mechanisms for generating two-way communication. Second, Abramson continued, citizen action often requires interpretation and deliberation. Thus, strategies need to allow these processes to occur and efforts should be made to provide communities with accurate and reliable information, as well as tools to help them interpret complex or unfamiliar information. Local political and community leaders are often regarded as trusted sources, and can be instrumental in helping communities interpret such complex information.
Incorporating the topics covered during the course of his presentation, Abramson recommended five immediate actions to develop effective risk strategies:
Identify populations at risk and what makes them vulnerable. As explained above, vulnerabilities come in many forms. Predefined categories of vulnerability are not always useful.
Understand and address at-risk populations’ concerns.
Know which messengers and media the local communities trust.
Create communications platforms for disseminating and interpreting complex data and for enabling two-way communication.
Develop key roles for local leaders.
Abramson noted that a number of community-based platforms already exist to disseminate and interpret complex data. In Europe, for example, “science shops” assign a scientist to community groups, and they work together to interpret and understand the data. In closing, Abramson underscored the importance of developing capacity and responsibility among local leaders. Although local representatives may not have the scientific expertise to interpret all the data and information made available to the public, communities in the affected Gulf regions trust their parish presidents, mayors, and local health officials to represent their best interests.
Mike Magee, Positive Medicine, Inc.
Good instructional design and graphic displays can improve communication of complex topics to the general public. According to Mike Magee, by focusing on the quality and not the quantity of the message, graphic displays force the messengers to develop succinct messages, which generate behavioral change. Following a short presentation illustrating the power of graphics to improve communication, Magee initiated dialogue with the audience. To gain a better understanding of the issues about the Gulf oil spill that most concern different at-risk populations, four community representatives were invited to comment on the Deepwater Horizon disaster before the floor was opened to the audience.
On Behalf of Dillard University’s Deep South Center for Environmental Justice
Myra Lewis drew on her 20 years of experience in outreach and communication. Lewis expressed gratitude that the workshop discussed so many of the factors that put Gulf Coast communities at risk, such as economic challenges, language barriers, and previous trauma. Because of past trauma, Lewis explained that many communities had lost some of their resiliency, felt powerless in the face of this current disaster, and no longer trusted governmental authorities at any level. Consequently, identifying trusted authorities to disseminate information would be essential for communication activities.
Adequate worker training also was a concern. Lewis emphasized the need for rigorous 40-hour training for the “individuals that are answering the call to go out and clean up this oil spill.” She observed that the Deep South Center for Environmental Justice had received hundreds of calls in the weeks prior to the workshop, from local fishermen and -women and people who requested more in-depth training, as opposed to the 4-hour training that is being offered elsewhere. Volunteers are concerned about protecting themselves from unwarranted exposures, said Lewis.
On Behalf of the Gulf Region Vietnamese-American Fishermen Population
Diem Nguyen remarked that financial ruin caused by the Gulf oil disaster was the greatest concern among the Vietnamese-American fishermen. Having come from Vietnam and not knowing any other livelihood, many fishermen question whether they still will be able to take provide for themselves and their families and how long the uncertainty will persist. Moreover, language barriers make it very difficult to tell a 50-year-old man, who has been fishing all his life, that he must learn English and find a new livelihood. Nguyen described the threat to mental health as a “domino effect,” which began in the water and followed a path that ended with the loss of employment and financial security. In turn, this will negatively affect the mental and physical health of an already vulnerable population. However, Nguyen expressed hope that
collaborative efforts would soon begin to find strategies for protecting those individuals most vulnerable in the Gulf region.
On Behalf of Subra Company and Louisiana Environmental Action Network
During her comments, Wilma Subra focused on two populations at risk: the Gulf residents and the Gulf fishermen and -women (some of whom are now employed as clean-up workers). At the time of the workshop, “when the winds blow from the south,” these populations already were experiencing headaches, nausea, dizziness, respiratory problems, and burning eyes. Additionally, despite assurances to the contrary, many workers reported exposure to dispersants.
Subra also described growing animosity toward current authorities handling the oil spill response. Many fishermen and -women who had lost their livelihoods applied for and received clean-up work, but then became ill after beginning the clean-up work. Subra explained that some of these workers and their families felt that they could not complain about their illnesses for fear of losing their jobs. Additionally, these same workers were not seeking medical care, nor were they participating in health impact surveys, as this was equated to admitting sickness and could lead to termination. She concluded by saying that in 2010, workplace environments should not be exposing workers to conditions that threaten their health.
On Behalf of the Mississippi Interfaith Disaster Task Force
John Hosey stated that the Mississippi Interfaith Disaster Task Force was putting together a summit to begin working on some of the emotional, behavioral, economic, and spiritual issues resulting from the Gulf of Mexico oil spill. Over the past few months, many of the questions raised during the workshop also were being raised among the faith-based communities. But, like the oil floating in the water, the answers that people were currently receiving were not “worth very much,” said Hosey.
This is not just a Gulf Coast problem—this is a national problem, which may become a global problem over time, Hosey said. He
described a regional summit that would bring together communities, businesses, and others impacted by the oil spill to develop a policy statement that would address emotional, spiritual, behavioral, and economic issues. Communities were frustrated due to job loss, conflicting messages, and uncertainties in how to respond to a disaster of this nature and magnitude. Given the history of the region, there is a distrust of research that does not lead to actionable outcomes. Hosey expressed a need to develop strategies for long-term response and encouraged researchers coming to the area to collaborate with the people in the region who know the affected communities.
OPEN DIALOGUE WITH THE AUDIENCE
To continue the dialogue with affected communities and to gain a better understanding of the issues of greatest concern to the Gulf population, audience members were invited to comment on any issues related to the Gulf oil spill. The discussion covered a wide range of topics, including barriers to research, community engagement, short- and long-term health consequences from exposures, advanced information technologies, converting data into action, and accuracy of terms.
Semantics: The Gulf Oil “Spill” Is Not Just a Spill
There was a comment about use of the word spill and that the Gulf oil disaster was not a spill—it was a “drilling disaster.” Indeed, throughout the workshop, various other terms were used at different times and by different speakers, including disaster, leak, blowout, and catastrophe.
Other Vulnerable Populations
Audience members identified two additional vulnerable populations: pregnant adolescents (because the Gulf region has residents who are among the “youngest mothers in the nation,” and pregnant adolescents often do not even know they are pregnant) and Latinos (who are uniquely vulnerable because many Latinos are assumed to speak English but do not).
Local Communities Are Not Just Risk Weary—They Are Also “Lab Rat Weary”
Adding to what several panelists said about the lack of trust in authority that exists in the Gulf region, there were several comments about local populations being “lab rat weary” from having been studied for so long. One audience member urged that any researchers considering studying the health impact of the Gulf oil disaster engage neighborhood groups and local community agencies in their research efforts. He stated that local community members are willing to contribute to research efforts but only if the research will have “meaningful and longstanding impact” for the community. Another audience member urged development of a “unified plan” for a coordinated research effort among universities and other research agencies to avoid unnecessary and duplicative research efforts. A few individuals commented about the need to unify efforts not only among institutions but also across sectors (e.g., environmental scientists and animal and human health researchers and practitioners).
Unanswered Questions About the Health Consequences of Gulf Oil Disaster-Related Exposures
There were several comments about hazards posed to human health and the environment related to the oil spill and its various clean-up activities. One comment discussed the lack of scientific evidence on the health consequences of exposure to combinations of chemicals. Other comments focused on the importance of considering not just long-term health effects of short-term exposure but also the long-term health effects of long-term exposure. Concern was raised about the long-term impacts of the oil-contaminated protective equipment and other supplies being disposed of in municipal waste sites.
One participant pointed out that oil contains many class I carcinogens and that crude oil itself is classified as a class III carcinogen. However, although exposures to some of the chemicals that exist in oil have been associated with lung cancer, multiple myeloma, acute lymphocytic leukemia, and chronic myeloid leukemia, it is not clear whether exposure to oil produces these same effects. Most of the studies have been only short-term, cross-sectional studies. It is very difficult to tease apart the effects of exposure to oil from other events in a person’s
life that also may increase the risk of cancer. This type of analysis requires a long-term commitment.
Addressing the direct effects of the oil spill on the environment, an audience member suggested that although naturally existing bacteria ingest and break down some of the chemical compounds in oil, these oil-metabolizing bacteria require oxygen. An increase in their numbers caused by a large food source could result in an even larger dead zone (which could cause indirect, adverse effects on human health, as Goldstein pointed out during his presentation).
Use Electronic Health Records for Surveillance and Research
A few audience members suggested that U.S. Department of Health and Human Services (HHS) technology funds be leveraged. Funding could be redirected to improve electronic health record keeping in the affected areas, and electronic health records could be used for surveillance. Some of the new information technologies could also be used to increase local participation in health research. As an example of how helpful new information technology can be, another workshop participant identified something called the Oil Spill Crisis Map (Louisiana Bucket Brigade, 2010) as a good example of a participatory research tool, which at the time of the workshop had already received 900 hits since May 1, 2010. Citizens can add information to the map through e-mail, Twitter, and other means, reporting on experiences related to the Deepwater Horizon disaster, such as reports of sores or blisters as a result of wading in oil-contaminated water. Something like the Oil Spill Crisis Map could be a valuable tool for tracking long-term health impacts or for identifying “hotspots.”
One participant remarked that “technology alone is not going to solve the whole issue” and that new technologies need a dedicated workforce behind them. Another participant expressed concern that, in areas where the average annual income approaches “Third World country status,” relying on Internet surveys may not be practical. However, in areas with reliable Internet access, one person suggested that cell phones may be an underutilized tool.
Combining Surveillance with Mental Health and Other Services
Hitting on what would eventually emerge as a major overarching workshop theme, one audience member emphasized the importance of balancing the need for good surveillance data with the need to generate data that are immediately useful to the people affected by the Deepwater Horizon disaster (i.e., people who “need help with very difficult and very personal decisions” about their circumstances). This led to discussion about the types of services needed and the challenges in providing those services, particularly mental health services. There was a comment about the lack of mental health services infrastructure in the region, which had not recovered from Hurricane Katrina. This was echoed by other remarks about the “overwhelming” mental health consequences of this disaster and the lack of sufficient community-based mental health services, particularly substance abuse services and services for children with developmental disabilities.