As part of its data modernization initiative (DMI), the Centers for Disease Control and Prevention, Division of Cancer Prevention and Control is testing and implementing innovative solutions to improve cancer surveillance data quality and timeliness. We describe a consensus-based effort to create a framework to guide the evaluation of cancer surveillance modernization efforts by addressing specific context, processes, and costs related to cancer registration. We drew on prior theories, consulted with experts, and sought feedback from cancer registry staff. We developed the cancer surveillance systems, context, outcomes, and process evaluation (CS-SCOPE) framework to explain the ways in which cancer registry data quality, timeliness, and efficiency are impacted by external and internal contextual factors and interrelated process and content factors. The framework includes implementation measures to understand acceptability of process changes along with outcome measures to assess DMI initiation and ongoing sustainability. The framework's components and structures can be tailored for use in other DMI evaluations.

Cancer surveillance is a field focused on collection of data to evaluate the burden of cancer and apply public health strategies to prevent and control cancer in the community. A key challenge facing the cancer surveillance community is the number of manual tasks required to collect cancer surveillance data, thereby resulting in possible delays in analysis and use of the information. To modernize and automate cancer data collection and reporting, the Centers for Disease Control and Prevention is planning, developing, and piloting a cancer surveillance cloud-based computing platform (CS-CBCP) with standardized electronic reporting from laboratories and health-care providers. With this system, automation of the cancer case collection process and access to real-time cancer case data can be achieved, which could not be done before. Furthermore, the COVID-19 pandemic has illustrated the importance of continuity of operations plans, and the CS-CBCP has the potential to provide such a platform suitable for remote operations of central cancer registries.

PURPOSE: Given the reach, breadth, and volume of data collected from multiple clinical settings and systems, US central cancer registries (CCRs) are uniquely positioned to test and advance cancer health information exchange. This article describes a current Centers for Disease Control and Prevention (CDC) National Program of Cancer Registries (NPCR) cancer informatics data exchange initiative. METHODS: CDC is using an established cloud-based platform developed by the Association of Public Health Laboratories (APHL) for national notifiable disease reporting to enable direct transmission of standardized electronic pathology (ePath) data from laboratories to CCRs in multiple states. RESULTS: The APHL Informatics Messaging Services (AIMS) Platform provides an infrastructure to enable a large national laboratory to submit data to a single platform. State health departments receive data from the AIMS Platform through a secure portal, eliminating separate data exchange routes with each CCR. CONCLUSION: Key factors enabling ePath data exchange from laboratories to CCRs are having established cancer registry data standards and using a single platform/portal to reduce data streams. NPCR plans to expand this approach in alignment with ongoing cancer informatics efforts in clinical settings. The 50 CCRs supported by NPCR provide a variety of scenarios to develop and disseminate cancer data informatics initiatives and have tremendous potential to increase the implementation of cancer data exchange.

OBJECTIVES: This review summarizes past and current informatics activities at the Centers for Disease Control and Prevention National Program of Cancer Registries to inform readers about efforts to improve, standardize, and automate reporting to public health cancer registries. TARGET AUDIENCE: The target audience includes cancer registry experts, informaticians, public health professionals, database specialists, computer scientists, programmers, and system developers who are interested in methods to improve public health surveillance through informatics approaches. SCOPE: This review provides background on central cancer registries and describes the efforts to standardize and automate reporting to these registries. Specific topics include standardized data exchange activities for physician and pathology reporting, software tools for cancer reporting, development of a natural language processing tool for processing unstructured clinical text, and future directions of cancer surveillance informatics.

OBJECTIVE: To match Michigan birth and newborn screening records to identify and follow-up potentially unscreened infants, assess data quality, and demonstrate the utility of Link Plus linkage software for matching MCH related administrative datasets. METHODS: Birth and newborn screening records maintained by the Michigan Department of Community Health from January 2007 through March 2008 were used in this study. Link Plus, a freely-available probabilistic record linkage software program developed at the Centers for Disease Control and Prevention, was used to match records. Linkage performance was assessed by the linkage success rate (percentage of valid matches). Follow-up of un-matched records was conducted by the Michigan Newborn Screening Follow-up Program. RESULTS: Nearly all (99.2%) of the 142,178 birth records included in this study were successfully matched to newborn screening records. Following a transition to a web-based electronic birth certificate system and inclusion of a newborn screening card identification number on the birth record in 2008, the linkage success rate increased to 99.6% based on analysis of approximately 18,000 records. Of approximately 600 un-matched records, nearly half had received a newborn screen. Approximately 8% of un-matched records were due to parental refusal of newborn screening. Nine children received an initial screen as a result of this study; one was confirmed as having sickle cell trait. CONCLUSIONS: We have demonstrated that a freely available record linkage software, Link Plus, can be used to successfully match records of MCH databases thereby providing an opportunity for further research and quality assurance investigations.