Improving Central Cancer Registry Surveillance through Interstate Data Exchange of Electronic Pathology Reports

Abstract

When a cancer case is diagnosed or treated in one US state, but the patient resides in another, the case report abstract is shared with the central cancer registry in the state of residence through interstate data exchange. However, the records shared may not include pathology reports. Cases diagnosed in another state that would be ascertained only from pathology reports may thus be missed. Utah Cancer Registry received many electronic pathology (e-path) records for nonresident cases that were not being shared. In 2019, Utah Cancer Registry implemented workflow changes and created a novel data extract process to share e-path records in a North American Association of Central Cancer Registries (NAACCR) HL7 format. Utah Cancer Registry shared e-path records for an estimated 2,773 cases with other states for the diagnosis year 2018. Of these cases, both an e-path record and NAACCR-format abstract were shared for 1,709 (61.6%), whereas e-path record only was shared for 1,064 (38.4%). The largest number of e-path records went to 2 adjacent states: Idaho (n = 1,084) and Wyoming (n = 621). Receiving registries reported success importing the files. The e-path data stream resulted in ascertainment of 96 new cases for Idaho and 89 for Wyoming for diagnosis year 2018. Whereas most shared e-path records represented cases already known to the receiving registry, registry staff provided feedback that it was beneficial to obtain the additional documentation. Linking and reviewing the shared e-path records did represent additional workload. Central cancer registries can adopt this process for sharing e-path records via interstate data exchange to support complete case ascertainment in collaborating states.

Keywords: cancer registries; cancer surveillance; data sharing; insterstate data exchange; pathology.