Version 23
Data Item #1854: No Patient Contact Flag

This data item is used to flag when a patient, family member, or provider notifies the central registry that the patient does not want to be contacted for research purposes. This data item will be used in combination with the Reporting Facility Restriction Flag to identify data that the central registry may not be allowed to release. All reportable tumor records associated with a case that has been flagged will continue to be released for routine national surveillance activities (e.g., reporting to NCI, CDC, and NAACCR) and local public health surveillance activities (e.g., linkage for routine registry operations, use in cancer concern investigations, etc.), as well as studies that do not involve patient contact.

Cancer registries have an obligation to manage the appropriate use and release of cancer data. There are times when a patient, family member, or physician may indicate that the patient does not want to ever be contacted for research purposes; however, there is currently no standard NAACCR data item to flag cases where no patient contact is allowed. Central registries have captured this content using various codes and various fields such as Unusual Follow Up Method [1850], the SEER*DMS Patient No Contact field, or the State Requestor field, which will be retired in v22. It is essential that both reporting facilities and central cancer registries have a standard way to capture and transmit a flag to indicate when the patient should not be contacted for research purposes. Creating a standard data item would allow comprehensive and standard collection and transmission of this important information. This flag would be assigned at the patient level so that when an individual has multiple primaries, release of data on any and all tumor records would be restricted.

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