APPENDIX B: Communication

An overriding goal throughout the process of a cancer cluster investigation, beginning with the initial contact, is to communicate with transparency and to embrace community involvement. The health department and its process should be accessible to the community. This section provides guidance and resources on communicating during a cancer cluster response.

Developing Communication Plans

Before responding to any inquiries concerning a possible cancer cluster, the health agency should develop a one-on-one communication strategy. Key points in such a strategy should include the importance of listening and how to ask questions that will help determine the nature of the caller's concerns. If possible, responders should try to ascertain in the first call, the level of concern across the larger community. A basic communication plan should be created for answering initial inquiries about possible excess cancer cases. Such a plan will include anticipated characteristics of possible callers, questions to employ to gather the appropriate information, and talking points about cancer, clusters, and the scientific evaluation process. The plan also should define commonly used terms (e.g., cluster) in a clear and accessible way and emphasize that when speaking to a caller, a responder should use such terms in a consistent manner. Statistical concepts such as small samples size, random fluctuation, and statistical significance are difficult concepts for the general public audience to understand, and having consistent, clear, talking points that address these concepts is helpful.

If and when the investigators determine that the entirety of the evidence (e.g., an elevated SIR and an environmental contaminant that is linked to the cancer of concern in the published literature) supports proceeding with an investigation, they should make a concerted effort to establish a solid communication plan within the health agency's communications office. Components of such a plan should include identification of audience and messages, stakeholder groups, types of meetings, communications with the media, social networking possibilities, proactive versus reactive communication, and a commitment to a transparent approach.

Communication Audience

The communication audience throughout the process of inquiry or investigation will include the initial caller, other concerned community members, community leaders, public health partners, government officials, media, physicians, real estate agents, and other groups, depending on how far the inquiry progresses. The media might approach the health agency with questions at any time, and the health agency will need to be prepared with clear statements for publication. At all stages of the process, the primary concern is the community. If community concerns include a known or suspected industrial contamination, those in the health agency taking the inquiry or handling community and media relations should interact with the community before or at the same time as with the company responsible for the contamination, not after. The media can be important partners in conveying information to community members. However, the health agency should not underestimate the importance of meeting face-to-face with individuals with cancer, their families and impacted community members. This is especially important for sharing information about the health agency's actions or findings. The particular persons who comprise the "community" and the nature of community involvement will change during the steps of cancer cluster inquiries and investigations. The appropriate partners and stakeholders should be identified and involved.

In the initial contact, communication generally is aimed at the person reporting a concern about cancer in the community. The person might be a medical professional or a legislator or community resident with little or no medical expertise. After the health agency responder takes the call, the responder should communicate with agency partners (in the health agency(s) and, if necessary, in the appropriate environmental protection agency) to alert them to the community's concerns.

After the initial response and as a part of the inquiry, communication might extend to the inquirer's family and friends as part of the information gathering and sharing process. If the inquiry progresses past Step 1, the intended audience for communications will broaden to include community residents, members of the media, other agencies (state, local, or federal), and possibly elected officials. Once anyone beyond the initial inquirer is involved, the local health agency should be included in any communications, regardless of whether a statistical excess of cases can be determined.

If an excess of cancer cases is identified (Step 2) and an epidemiologic study is being considered (Step 3), two-way communication with community members is important. One method to accomplish such communication is to convene a community panel. This entity should include individuals who represent the community and, if possible, those with specific expertise that might be helpful during the process. The health agency should hold regular meetings with the panel. The panel should be well organized and have an agenda to keep the discussion on track and to conduct a useful dialogue. Participants in meetings might include concerned residents, residents with expertise, and local health, media, and elected officials. Such meetings provide a useful way to learn about the community and to build trust, credibility, and transparency. They are also useful for keeping the investigation's activities appropriate, focused, and on track. The community panel should be established early in an investigation; otherwise, other models might need to be considered. In communities where trust in government has eroded, it is particularly important to engage the community in the selection of participants of a community panel.

Health agency officials should use their best judgment and assess through personal interactions with community members, media, and internet postings whether a community panel (set up to facilitate communication around the community's cancer cluster concerns) is warranted. If not, the health agency and its investigators should work to establish relationships with existing, trusted community groups and suggest regular, structured, two-way communication with those groups.

Communicating in Uncertain and Stressful Situations

Because of the perception of health and environmental risk, persons can feel uncertain, worried, and less trusting. Accordingly, principles of risk communication should be part of the training for anyone dealing with the process of cancer cluster inquiries or investigations (1). A few key communication concepts at any step of the inquiry include the following, adapted for cancer clusters from previous guidance (2):

• be a credible and consistent source,
• create realistic expectations,
• raise awareness of other credible sources,
• be empathetic and have patience,
• be supportive and receptive to the information reported, and
• listen clearly and consistently.

Proactive Community Involvement

During Step 2 (the process of determining whether an excess of cancer cases exists), obtaining community input might be useful but not vital. However, once the decision is made to proceed to Step 3, proactive community involvement is critical, not only for gathering information but also for sharing the investigation parameters and process with the community and other affected or collaborating partners.

One way to involve the community broadly is to establish advisory groups, such as a community panel (See Step 3, Procedures.). Another way is to hold public meetings. If, during the process of investigation, a need is identified to have public meetings, a clear agenda and goal should be set for each meeting, including discussions of major milestones (e.g., completion of the feasibility assessment). The format and atmosphere of a public meeting can have great influence on its outcome. For example, town hall–type public meetings can allow community members to express frustrations and feelings to officials. Health agency personnel who listen well can establish credibility with the community in such meetings. However, some agencies might have difficulty in communicating well in this format. In these cases, an agency should use trained facilitators who understand the local culture. In such meetings, the health agencies should keep presentations short and use plain language. An alternative is to conduct public meetings with a series of "stations," at which data (e.g., maps) can be presented and discussed in one-to-one or small-group communication. This is one way to involve partners such as environmental agencies and community groups in this type of meeting.

Depending on the community's unique needs, one of these approaches or a combination might work best. For each type of meeting, the health agency should include resources for community members who attend, such as educational materials about cancer. Because dealing with a suspect cancer cluster can bring great stress to members of the community, potentially causing additional stress-related illness, resources about stress management also might be useful in promoting public health.

Other options for communicating on a regular basis with the community include establishing a toll-free telephone number for use by members of the community to ask questions during the entire process, providing regular (e.g., monthly) written updates between meetings, creating a website with all relevant information (including a compilation of questions and answers) or, if necessary, establishing a community office. The local health agency will be a valuable partner at this stage of communications.

Another avenue is to work with the state communications department and/or public affairs office to use social media as a communication forum about the investigation. Community members are likely to use social media to obtain information. Putting information out on social media sites and inviting questions has advantages and disadvantages. It is similar to having a toll-free number available, but it also allows for two-way communication that can be viewed by and shared with others. Members of the community also might use their own social media sites, including blogs, to ask questions and express their own opinions. Monitoring such sites provides a valuable opportunity for the health agency to be aware of community concerns and to address misconceptions (3,4,5).

Resource for State and Local Health Agencies

CDC and the National Public Health Information Coalition (NPHIC) have published a useful resource which is currently available to state and local health agencies, providing detailed guidelines on communicating in cancer cluster investigations (available at http://www.nphic.org). Cancer Clusters: A Toolkit for Communicators (6) includes information on working through a suspected cancer cluster scenario. It provides suggested outreach techniques for various audiences and offers answers to commonly asked questions about suspected cancer clusters. It also provides literature resources, a glossary of cancer cluster terms, a guide to education by use of social media, and case studies.

References

1. Krimsky S, Plough AL. Environmental hazards: communicating risks as a social process. Dover, MA: Auburn House; 1988.
2. Covello VT, Allen F. Seven cardinal rules or risk communication. Washington, DC: US Environmental Protection Agency; 1988. Available at http://www.epa.gov/care/library/7_cardinal_rules.pdf.
3. CDC. CDC guide to writing for social media. Atlanta, GA: US Department of Health and Human Services, CDC; 2012. Available at http://www.cdc.gov/socialmedia/Tools/guidelines/pdf/GuidetoWritingforSocialMedia.pdf.
4. Fox S. The social life of health information, 2011. Available at http://www.pewinternet.org/Reports/2011/Social-Life-of-Health-Info.aspx.
5. Dredze M. How social media will change public health. IEEE Intelligent Systems, 2012;27:81–4.
6. National Public Health Information Coalition. Cancer clusters: a toolkit for communicators. Available at http://www.nphic.org.