© 1999 by Oxford University Press
Journal of the National Cancer Institute Monographs, No. 25, 182-185,
1999
© 1999 Oxford University Press
Cancer Risk Communication—What We Know
Correspondence to: Elaine B. Arkin, Porter Novelli, 3435 N. 14th St., Arlington, VA 22201.
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INTRODUCTION |
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 Top Introduction BackgroundComplexities of RiskSuggestions for Improving Risk...Guidelines for Best PracticeSummaryReferences |
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Participants in this session were charged with identifying "best practices" in cancer risk communication for mass media and interpersonal communication. The participants discussed a variety of factors that contribute to effectively communicating about cancer risks, beginning with understanding the message receiver. Participants explored the continuum of steps and decisions that contribute to best practice and how to ensure that decisions made in each stage of this complex communication process contribute to effective communication.
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BACKGROUND |
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TopIntroductionBackgroundComplexities of RiskSuggestions for Improving Risk...Guidelines for Best PracticeSummaryReferences |
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The public is fed a steady diet of risk information. For cancer, this includes information about the risks of certain cancers (e.g., breast cancer), lifestyles that increase the odds of getting cancer (tobacco use), cancer-related environmental exposures (asbestos), risk-reduction practices (eating five fruits and vegetables a day), and risk trade-offs (medical treatments that may increase cancer risks).
Information about risks is communicated in a variety of ways: Research findings are reported in scientific journals and then in the news; public policy deliberations are shared through conferences and published reports; and planned communication campaigns address longer-term problems, such as asbestos exposure and radiation fallout.
For the mass media, news about risks can be an attention getter, so it is an attractive kind of story to cover. Often, the risk news story is incomplete—partially because of inherent time and space limitations and partially because the complexities of risks could not practically be explored in most news venues. Even explaining these complexities to news reporters is a challenge; for example, the National Cancer Institute receives over 12 000 media inquiries each year, almost always with short response deadlines that limit the depth of information that can be provided or used. In addition, the number of channels that provide access to news and health information is increasing rapidly, with an explosion of cable television programs and World Wide Web sites offering health information.
As a result, the public may be confused, unduly alarmed, or too jaded to respond appropriately to serious risks. When people underestimate or overestimate their risk, not only individual decisions but also public policy decisions can be adversely affected. Therefore, participants identified a need to construct risk communications that convey adequate information about a health risk and to help ensure that the public is enabled to respond in appropriate ways.
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COMPLEXITIES OF RISK |
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TopIntroductionBackgroundComplexities of RiskSuggestions for Improving Risk...Guidelines for Best PracticeSummaryReferences |
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In general, the term "risk communication" is used to cover a broad range of types of risks and types of communication. The origin of the health risk may be environmental, genetic, or behavioral, or it may be related to medical treatment. Each of these sources of risks may engender different degrees of understanding and emotions among the public.
Often, a risk results from multiple causes, further complicating both communications and comprehension. How the public receives communications about risks having multiple causes has not been well documented. And, although the public's understanding of and reaction to other types of risks (e.g., environmental and behavioral) have been explored in depth, public response to cancer risks has been less well documented and is complicated by the public's cancer fears.
Where there have been similar situations in the past, the risk communicator can anticipate the potential for public reaction, such as appropriate or inappropriate alarm, action, and demand for risk reduction (e.g., the public may be unduly alarmed in response to news about a potential but rare cancer risk in processed food). Although it is not possible to foresee specifically how the public will react, understanding how the public has responded to similar events in the past is helpful in planning cancer risk communications. In addition, past experience can guide formative research conducted to improve the communication or anticipate the public's response.
Conversely, new risk information related to entrenched personal behaviors may be ignored, denied, or discounted. In such cases, the risk communication planner may need to consider broader, longer-term communication programs with the use of multiple strategies to impress affected individuals.
Therefore, participants noted, important first steps in effective risk communication include identifying how the public has reacted to similar types of risk information in the past, conducting market research to better anticipate public response to the new risk (where time and resources permit), and determining appropriate communication strategies, such as providing background information to reporters, providing the interested or alarmed public with access to accurate information as well as advice about steps to take if they are worried about risk exposure, or planning a longer-term program to influence public attitudes or behaviors.
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SUGGESTIONS FOR IMPROVING RISK COMMUNICATION PRACTICE |
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TopIntroductionBackgroundComplexities of RiskSuggestions for Improving Risk...Guidelines for Best PracticeSummaryReferences |
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Communicating effectively about cancer risks requires interdisciplinary best practice, spanning communications by risk and health communication practitioners, health care providers, public health officials, journal editors, public relations practitioners, reporters, advocacy groups, and scientists.
Even though there still are many uncertainties regarding certain aspects of how to effectively communicate about risks, the group concluded that best practice calls for tracing the path of communication from the researcher to the intended recipient and for making a series of judgments related to the purpose, context, and audience for the communication.
In the absence of planning models specific to risk communications, health communication planning models (such as the health communications "wheel" developed by the National Cancer Institute) should be used, participants said (1,2).
To increase effective risk communication, participants specifically suggested the following:
- Establish a "Center of Excellence" in risk communication (i.e.,
at the National Cancer Institute) to serve as a source for research,
training, technical assistance, and guidelines setting.
- Promulgate principles of best practice on the basis of standards in
related fields, including health education and health communications,
and tailor them for different types of risk communicators (including
journalists, journal editors, institutional spokespersons, and researchers).
- Provide a "guide to communicating about cancer risks" for
health care providers faced with patient counseling responsibilities
(such as counseling about genetic testing).
- Promote the use of "checklist" tools to guide immediate
decisions (such as writing press releases or answering reporter and
public inquiries) when brevity in response and response time is the rule.
- Prepare guidelines on how best to present risks in numerical terms
to the public for use by scientists preparing or reviewing journal
articles and for journal editors, reporters, and others interpreting
risks for the public.
- Create primers, checklists, or other tools to help the public
understand risks (participants cited guides developed by organizations,
including the National Breast Cancer Coalition).
- Work with professional organizations, such as the National
Association of Science Writers, to develop a consensus about necessary
components of a risk press release or feature article as a benchmark.
- Work with scientific journals to encourage authors to prepare a
"public abstract" or context (such as prior studies and baseline
data), covering reported work that would help explain the meaning of
results to the public (including, participants noted, professionals
from other disciplines).
- Work with scientific journals to construct and promote consistent
ways of presenting data and encourage journals to require authors to
meet certain standards.
- Work with radio or other mass media to produce and air regular
short features covering and explaining reports in medical and
scientific journals.
- Provide additional "contextual documents" to intermediaries,
such as journal editors who publish the results of studies (these
documents should provide background or context for the new findings).
- Cross-train between journalists and scientists to help improve
understanding of how each communicates about risks and to improve
interaction to meet each other's needs.
- Provide the suggested interaction, training, and guidance for risk
communication within the broader framework of accepted health communication
practice (such as the need for formative research and evaluation).
The group also identified the following gaps in guidance for effective risk communication practice:
- No planning framework that identifies key decisions in risk
communication planning and evaluation
- No body of evaluation research that provides best practice
examples
- Little understanding of differences in comprehension and
decision making related to cancer risks among different cultural groups
- Little knowledge of how the public perceives and processes
information about multiple risk factors
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GUIDELINES FOR BEST PRACTICE |
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TopIntroductionBackgroundComplexities of RiskSuggestions for Improving Risk...Guidelines for Best PracticeSummaryReferences |
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What can be considered best practice varies by type of risk communication. For example, some best practices among reporters differ from those of institutional public relations managers. And the most effective ways of communicating about fast-breaking news differ from the ways to plan effective communication campaigns for risk reduction. Nevertheless, participant discussion revealed the following general guidelines to effective communications about cancer risks:
- 1) First identify the risk communication goal.
2) Determine who needs to know.
3) Factor in target audiences' perceptions of risk.
4) Select the most appropriate channels for each risk situation.
5) Determine how to manage multiple voices.
6) Explain the risk clearly.
7) Provide context to improve understanding.
8) Include recommended actions or other advice.
9) Assess the outcome.
10) Determine whether the situation requires additional attention.
These guidelines are particularly pertinent for planning a proactive educational campaign, and some are useful when dealing with episodic reports of risk in the media.
First Identify the Risk Communication Goal
Identifying the goal (purpose) of the risk communication is an important first step. Answering the goal-setting question "Why do we want to communicate about this risk?" should guide subsequent decisions about how the risk will be communicated. Diverse communicators often have different goals for reaching out to the public about a cancer risk; some may want to minimize the reaction to a risk, whereas others may want to maximize it. Examples of goals participants cited include the following:
- Inform the public about a risk (the public's right-to-know).
- Help people more accurately understand their own risks.
- Increase individuals' abilities to make informed decisions
about reducing risks.
- Decrease public misconceptions about certain risks and provide
reassurance when appropriate.
- Inform public policy decisions.
- Persuade the public to support legislation, public policy, or
resource allocation to help remedy a problem.
- Promote the capabilities, activities, or policies of a
corporation or other entity.
- Increase support for risk-related research.
Determine Who Needs to Know
Participants were quick to point out that there is no uniform "general public," but rather numerous smaller, sometimes intersecting groups of individuals sharing common concerns, interests, perspectives, or demographic characteristics. For example, individuals can be clustered into narrower "target audiences" according to degree of risk exposure or ability to influence risk reduction policies. Decisions about "who needs to know" should take into account not only who is affected by the risk, but also who can affect the risk situation or who is not affected but unduly concerned. Individuals who interact with those at risk (such as caregivers or family members) are one example. Others include policymakers, public health officials, health care providers, and business managers who may be called into the situation.
For each group identified, there will likely be some differences in what needs to be communicated. Also, each group may bring different levels of risk understanding and different perspectives and emotions that need to be considered in risk communication design.
Factor in Target Audiences' Perceptions of Risks
As addressed in the panel on "Overarching Considerations in Risk Communication" [as well as by other presenters (3)], an individual's own perceptions of his or her risks and life situation influence how risk information is received and used.
First, the public's fear of cancer needs to be acknowledged. Fears can lead to denial, avoidance of appropriate responses, or overreactions to new risk information. Individuals' perceptions of the personal relevance of the risk as well as their perceptions of their own ability to protect themselves can affect how they receive and respond to the risk communication. Previously held misconceptions about cancer and cancer risks also can color reactions to new risk information.
The public frequently demands answers to specific risk questions. Therefore, they should not be viewed solely as the end target of risk communications, said participants. Rather, public perceptions, wants, and needs should be identified early on and integrated into risk communication planning. Therefore, as one participant noted, "[Best practice] is not a top-down approach . . . but it's formative research [with] our target audience."
Select the Most Appropriate Channels for Each Risk Situation
Best practice includes weighing channel options and selecting the most appropriate channels for each particular risk situation. Where the risk message appears can affect how the public receives it. Participants noted that, whereas the generation of new knowledge occurs within the scientific community, the translation of the new information to the public entails many steps, each with inherent communication challenges. Information provided through one-on-one counseling by a health care provider to a patient will be perceived differently from news in the mass media, for example. In most cases, information delivered in person by a health care provider is more credible and influential than the evening news.
The risk communicator should recognize the attributes and limitations of different channels, including the varying degrees of credibility they lend to risk messages. Usually, participants noted, risk communication is conveyed through multiple types of channels, whether intentionally (planned) or unintentionally.
Once channels are identified, steps should be taken to work with the "gatekeepers" to those channels (such as news reporters, journal editors, or health care providers).
Determine How to Manage Multiple Voices
Another complicating factor is the variety of spokespersons potentially involved in communicating about risk. Participants provided examples, including health care providers, scientists, corporate spokespersons, advocates, and public relations practitioners (such as those at medical institutions).
In addition to those who personally communicate about risks, there also are other decision makers who influence how risk information is communicated, such as journal editors, news directors, senior scientists, and corporate directors. Each may have a different perspective on the information being provided, different levels of preparedness to communicate complex information to the lay person, and different degrees of credibility with the public. As one participant noted, "The credible source is the most important factor of communication."
Several participants mentioned a dilemma in many organizations, especially those related to environmental policies and research, in which the communication specialist (the individual most likely to be skilled in communicating about risks) is "marginalized"—i.e., not seen as a "central player" in planning how to communicate about cancer risks.
It also was noted that there are inherent tensions in discussing the goals of risk communications across disciplines; for example, public health professionals may look at emerging evidence of a threat to health and determine a need to take action to safeguard the public's health, whereas the scientific community may perceive a need to wait for a greater level of scientific evidence or proof of risk before taking a stand. Another dimension is added when there are differences in perspectives (or vocal opposition) between public interest groups, the scientific community, and business interests, as in the case of alar contamination of apples.
This means that communication about any specific risk is likely to occur within an environment replete with confusion—including varied, and sometimes conflicting, information and advice.
Therefore, the risk communication practitioner needs to identify who the communicators will be; determine differences in perspectives, goals, and potential to affect public risk response; and determine how best to manage the potential effect of "multiple voices" on the outcome of the risk communication.
Explain the Risk Clearly
Participants discussed several complicating factors related to crafting risk communication messages.
- Best practice requires synthesizing aspects of many disciplines
that contribute to effective risk communication (including health
communications, behavioral sciences, risk management, political science,
journalism, social marketing, medicine, epidemiology, and psychology).
- Many individuals with the responsibility are trained in only
one of these disciplines, leading to variations in how risk
communications are shaped.
- Risk concepts are often complex and difficult to explain.
The construction of risk communication messages has been explored in depth, although such exploration does not necessarily produce generalizable guidance for all risk communications, given the variation among risk situations. Participants discussed the attributes of tailored messages, guidelines for journalists for the reporting of cancer risks, and tips for writing and presenting cancer risk information to improve comprehension and to inform decision making. (See papers in this monograph by Rimer and Glassman, Russell, Brody, Schwartz and Woloshin, Lipkus and Hollands, O'Connor et al., and Strecher et al.)
For example, the National Cancer Institute (4) recently conducted a series of focus groups to explore how terminology selected (e.g., substituting the word "chance" for "risk" under some circumstances) and how presenting risk information visually can help improve public understanding.
As attributes of best practice, participants discussed the need to ensure that risk information
is both comprehensible and is provided in context (e.g., with information that helps explain the
significance of the risk for an individual or community), whether the risk can be avoided, as well
as the consequences of risk exposure (see Table 1
).
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Provide Context to Improve Understanding
The public is more likely to understand and respond appropriately to risk information when "background" information explains who is at risk and who is not, how significant this risk is in comparison with other health threats, how dire the consequences are, and how sure scientists are that the risk can lead to cancer (5,6). This type of context can help people decide whether and how the risk is personally relevant.
Explaining uncertainties is important, participants said, because, as scientific evidence continues to accumulate, judgments about risks and disease risk factors change. If the public does not understand that these changes are a positive outcome of the scientific process, the credibility associated with risk communications can be undermined.
Several participants also mentioned the importance of explaining limitations associated with a specific risk communication, such as reporting the outcomes of one study as opposed to a cumulative body of data.
The type of contextual information to be provided should be, in part, influenced by the public's current views on the topic; e.g., where it is known that the public has little knowledge of the risk, more definitional information may be required than when referring to a risk about which the public is familiar (such as the risk of lung cancer associated with smoking).
Include Recommended Actions or Other Advice
Informing the public without explaining what can be done about a cancer risk can lead to frustration or even anger. When possible, risk communications should include the following:
- Recommended actions to avoid the risk or lessen the consequences
of exposure
- Sources of additional information or assistance
Participants discussed the benefits of using decision aids to help individuals process information, clarify options, and make appropriate decisions to ameliorate the effects of risk exposure.
Assess the Outcome
People do not respond to risk information in a consistent manner. Therefore, it is important to assess how the risk communication was received and how the public reacted. In this case, participants said, "the public" includes both target audiences and others who were exposed to the risk information.
Assessment should indicate the degree to which the original purpose or goal has been met. Assessment also can reveal unintentional results, such as individuals becoming unduly alarmed or taking unnecessary precautions, or otherwise misinterpreting or misusing the risk information.
Assessment is needed to make decisions about whether additional communications (or other actions) are needed to address the risk situation.
Determine Whether the Situation Requires Additional Attention
Assessment information should be used to decide whether the original goals have been met. Determinations also can be made about whether to continue or change tactics to address changes in public perceptions, actions, or risk exposure.
Risk situations change over time, and the risk communication approach should be altered to fit changed circumstances; e.g., further study can change what is known about a risk, or new policies and programs can change how the risk affects the public. Political forces or advocacy groups may have established or changed positions. Also, public knowledge and risk-related actions are likely to shift as a result of risk communications. Therefore, periodic reassessment of a risk situation should be conducted to determine whether, why, how, and what to communicate about a risk.
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SUMMARY |
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TopIntroductionBackgroundComplexities of RiskSuggestions for Improving Risk...Guidelines for Best PracticeSummaryReferences |
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In addition to these broad guidelines, participants suggested that more specific guidance be provided for risk communicators in different sectors, including journalists, journal editors, governmental and organizational spokespersons, and risk researchers. The National Cancer Institute and other organizations also have produced materials to help the public understand, interpret, and make decisions about new risk information and to guide those who communicate about cancer risks. These kinds of efforts to enable the public to apply risk information are vital and should be continued, participants said.
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REFERENCES |
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TopIntroductionBackgroundComplexities of RiskSuggestions for Improving Risk...Guidelines for Best PracticeSummaryReferences |
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1 National Cancer Institute. Making health communication programs work: a planner's guide. Bethesda (MD): National Cancer Institute; 1992.
2 Centers for Disease Control and Prevention. CDCynergy, Version 1 [CD-ROM]. Atlanta (GA): Centers for Disease Control and Prevention; 1998.
3 Fischhoff B. Why (cancer) risk communication can be hard. J Natl Inst Monogr 1999;25:7-13.
4 National Cancer Institute, Office of Cancer Communications. How the public perceives, processes, and interprets risk information: findings from focus group research with the general public. Bethesda (MD): National Institutes of Health, National Cancer Institute; 1998 Report No.: POS-T086.
5 Rothman AJ, Kiviniemi MT. Treating people with information: an analysis and review of approaches to communicating health risk information. J Natl Cancer Inst Monogr 1999;25:44-51.
6 Russell C. Living can be hazardous to your health: how the news media cover cancer risks. J Natl Cancer Inst Monogr 1999;25:167-70.
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