Responding to Community Concerns about Unusual Patterns of Cancer

STLT health officials often receive inquiries from the public about cancer occurrence within neighborhoods or communities. Community members may contact the health department with concerns about local environmental conditions that may or may not be related to the cancer(s) of concern. Initial contact with the person making the inquiry is a critical opportunity to understand their concerns. At this early stage, listening skills are paramount to establish trust. This early interaction also allows the health official and community member to explore optimal community engagement strategies. In some cases, the inquirer is reaching out to the health department to provide information and to seek information on the pattern of a particular cancer in a community, often due to a recent cancer diagnosis in a family member or friend. In these situations, the health official can provide information directly over the phone or through email communication. In other situations, the inquirer may be seeking information on behalf of the community at large or a neighborhood or other community-based organization. Gathering additional information will likely be necessary.

Communicating with and Engaging Communities

According to the American Cancer Society more than 1,000 suspected cancer clusters are reported to state health departments within the United States each year (10,34). Although the specifics of each inquiry may vary, STLT public health agencies should be prepared for these events.

Due to limits of epidemiologic and statistical methods, many investigations of unusual patterns of cancer will be unable to establish a relationship between a specific environmental exposure and a health outcome (10), and in some cases, there may be no relationship. This presents communication and community engagement challenges. Discussion of challenges at the onset of community engagement may enhance community understanding of scientific issues, including limitations upon which decisions are based (7,35). As previously mentioned, a review of the roles and responsibilities of organizational units may also be helpful in discussions with community members. Establishing clear and ongoing communication channels about activities and challenges associated with the evaluation of unusual patterns of cancer and environmental concerns is important.

Establishing and Maintaining Trust

Generally, early interactions with a health official will determine the level of trust and credibility a community member may have throughout the assessment of health and environmental concerns. Establishing and maintaining trust throughout an inquiry depends on the following:

  • Listening to and understanding community concerns
  • Ensuring equitable access to information
  • Involving community members in the decision-making process

Different inquiries will require varying levels of community engagement. In many cases, an inquiry may satisfactorily end after an initial conversation with the concerned inquirer. The inputs received as part of the updates to the guidelines also highlighted the need for trust between communities and health departments investigating community concerns about cancer.

Developing Communication Plans

STLT public health agencies can use cancer inquiries as a broader opportunity to 1) engage with the communities they serve, and 2) inform community efforts to implement policies, plans, and laws that impact health (including the removal of environmental burdens). Successful cancer investigations should aim for optimal community engagement and participation to build trust in the public health system.

To accomplish this, public health agencies can develop a cancer and environmental health communication plan and integrate risk communication principles throughout all steps of an inquiry. The plan should be clear and establish roles of health department personnel, including, but not limited to, who will lead the further assessment of data and who will be the point of contact for community members who are seeking information about the progress of the inquiry. Additionally, communications staff members can assist with disseminating information through social media and other established communication channels.

Using the Guidelines and Related Tools

This document provides suggestions for enhancing communication throughout the various phases of responding to community concerns about unusual patterns of cancer. The 2013 Guidelines included a communication appendix encouraging proactive communication, community involvement, and transparency. In 2013, the National Public Health Information Coalition and CDC published a set of accompanying tools for state health departments to assist in engaging with communities. As with other tools and templates being developed, updates to the communication tools will be available on the Resources and Tools webpage. These tools can be used or adapted by STLT public health agencies to assist in their response. Additional resources are also provided in CDC’s Crisis and Emergency Risk Communication manual and on ATSDR’s website, including the Community Stress Resource Center and the Community Engagement Playbook.