Phased Approach to Respond to Community Inquiries: Phase 1

A phased approach to communicating with and engaging communities will help with the following:

• Initiating lines of communication with the inquirer and community members
• Examining data and criteria aimed at evaluating the occurrence of cancer
• Exploring further epidemiologic studies

Information about the phased approach is provided in the sections below, and additional details can be found in the Appendices.

Phase 1: Initiating Lines of Communication

The following section describes the information to collect (from the inquirer) and evaluate (using a decision-making template and other information). Record the inquirer’s information in a standard intake form to log when a call or email is first received. The intake form helps document if this is the first time the person is calling, if the geographic area or cancer(s) of concern has been mentioned previously, and if there are multiple people raising concerns about the same geographic area or cancer type(s).

The Cancer Inquiry Intake Form, can be used to gather the following key information:

• Inquirer information: Name, residential address, email address, telephone number, length of residence at current location, and organization affiliation (if any)
• Inquirer information about the patterns of cancer: Types of cancer and number of cases of each type, age at diagnosis of people with cancer, geographic area of concern, time period over which cancers were diagnosed, and how the inquirer learned about concerns about cancer patterns
• Other information: Any specific environmental concerns, other risk factors (e.g., occupation, behavioral risk factors, and family history of cancer), concerns in the affected area (e.g., the likely period of environmental contaminant exposures)
• Important reminders: If the inquirer requests anonymity, you should comply. But explain that the inability to follow up with the caller might hinder further investigation. Keep in mind that the inquirer might not have information to differentiate between primary site and metastatic cancers and will most likely not be aware of all cases of cancer in the area or during the time frame of concern.

The Cancer Inquiry Intake Form is available upon request under the forms section of the Resources and Tools webpage.

Work with the inquirer to fully understand their range of concerns. In many cases the concerns associated with cancer may be prompted by other factors that warrant separate and/or related follow up (e.g., the presence of environmental hazards within a neighborhood or community). States may elect to share information from the form (excluding personally identifiable information) with NCEH’s Health Studies Section. Sharing this information may allow for evaluation of any potential regional or national trends requiring follow up and may allow federal officials to report the number of community cancer inquiries occurring nationally.

Establish Points of Contact

For successful engagement it is important to establish points of contact at the health agency (agency point of contact, aPOC) and within the community (community point of contact, cPOC). CDC/ASTDR recommends the following when engaging with a cPOC:

• Establish the communication process (e.g., email, phone contact, or some other communication channel) as well as the time frame for future contact.
• Determine the primary cPOC and gather that individual’s contact information. The cPOC may be the inquirer. Alternatively, another individual(s) identified by the inquirer may serve as the cPOC if they are viewed as a trusted representative of the inquirer and/or the community.

The aPOC should have strong empathy skills and experience in cancer epidemiology and/or experience in environmental science. It is the responsibility of the aPOC to:

• Provide an estimated timeline of when the aPOC will re-contact the inquirer/cPOC.
• Listen to the inquirer and ask questions. Don’t dismiss the inquiry before gathering information.
• Log and record all actions taken regarding the inquiry.
• Relay information about what is being done about the inquiry to the inquirer. This communication should be open, transparent, and thorough.

CDC/ATSDR further encourages establishing a team of colleagues to help address concerns over cancer patterns prior to receiving inquiries. The aPOC can facilitate the creation of a team by:

• Reaching out to collaborators to plan initial discussions about the cancer inquiry. Collaborators could include other staff members within the health department (i.e., chronic disease and cancer control program personnel, environmental health practitioners, cancer registry workers, health educators, and geospatial specialists) and potentially other health agencies such as local health jurisdictions, tribal health agencies, etc.
• Reaching out to the state environmental regulatory agency if the inquiry is primarily regarding an environmental contaminant.
• Requesting technical assistance, if necessary. The following groups may provide or help coordinate technical assistance:
  • CDC/NCEH Health Studies Section
  • ATSDR Office of Community Health Hazard Assessment, including regional staff members
  • Regional Pediatric Environmental Health Specialty Units (PEHSUs)

As mentioned in the proactive evaluation section, a similar approach can be considered when deciding to move to Phase 2. Phase 2 is meant to build on the information gathered in Phase 1. Oftentimes interactions with the community will end with providing educational materials about risk factors for the cancer(s) of concern or information about the occurrence of the cancer(s) in the community. Pre-developed materials or review of data from cancer registries or on the Tracking Network Data Explorer can help provide guidance and education for the specific request and can help determine the need for continued assessment. However, some situations may suggest the need for further evaluation. Methods for reviewing data are further described in Phase 2.