Communicating What People May Not Want to Hear: CDC and Nphic's New Cancer Cluster Toolkit

Theoretical Background and research questions/hypothesis:  Each year, more than 1,000 suspected disease clusters are reported to state health departments; the majority are cancer clusters. As public knowledge of and interest in environmental toxins grow, along with media interest in cluster stories, state health departments must be prepared to answer to new concerns among their communities. Because of the limits of epidemiology and statistics, cancer cluster investigations to determine possible causation often remain unresolved. Health departments share the common challenge of explaining the limitations of cancer cluster studies to their concerned communities. To address this problem, a group of state and federal health communicators worked closely with epidemiologists and communities to determine the most essential communication needs surrounding cancer clusters and the most effective ways to address them.

Methods:  CDC and NPHIC established and convened a working group of communicators beginning in 2010. The workgroup studied the relevant literature and drew on risk communication techniques and their own experiences with cancer clusters to assemble a toolkit of materials for state and local communicators during a suspected cancer cluster event. The kit includes:

• Flow chart explaining where communications should be inserted during the investigation process.
• FAQs that can be adapted for responding to reporters or creating fact sheets or web sites.
• Glossary of common cancer cluster terms in plain language.
• Case studies for communicators.
• References and resources.

Concurrently, the Council of State and Territorial Epidemiologists worked to update the MMWR Guidelines for Investigating Cancer Clusters. The communications’ and the epidemiologists’ workgroups reviewed each other’s work for complementary products.

Results: The toolkit was tested with 48 people in 8 focus groups for clarity, tone, and comprehension.  State departments of health identified community member participants with and without experience with cancer clusters in Columbus and Marion, OH, and health department communicators with and without experience with cancer clusters nationwide by telephone.  Findings included:

• Some language was perceived to have a defensive or anti-empathetic tone; messages to calm people “can sound like a cover-up.”
• Respondents liked receiving facts and examples.  Statistics and facts about environmental causes of cancer were desired.
• The term “cancer cluster” carried negative connotations and was confusing. 
• Respondents wanted plain, direct language.

Conclusions:  On the basis of information from these four groups, the toolkit was revised and published in fall 2013 on the NPHIC and CDC websites. The MMWR updated cancer cluster investigation guidelines were also published in fall 2013.

Implications for research and/or practice:  The goal of the toolkit is to help communicators answer difficult questions and walk the line of sharing scientific knowledge while showing commitment to and compassion with a community. Ideally, state and local authorities will be working under the same framework. Coordinating the communications toolkit with the new epidemiological guidelines means scientists and communicators have additional, appropriate tools for working together during often complex cancer cluster investigations.