Consensus-based framework for evaluating data modernization initiatives: the case of cancer registration and electronic reporting.

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.

Operational Characteristics of Central Cancer Registries that Support the Generation of High-Quality Surveillance Data.

Objectives: We aim to assess external and internal attributes and operations of the Centers for Disease Control and Prevention (CDC)'s National Program of Cancer Registries (NPCR) central cancer registries by their consistency in meeting national data quality standards. Methods: The NPCR 2017 Program Evaluation Instrument (PEI) data were used to assess registry operational attributes, including adoption of electronic reporting, compliance with reporting, staffing, and software used among 46 NPCR registries. These factors were stratified by (1) registries that met the NPCR 12-month standards for all years 2014-2017; (2) registries that met the NPCR 12-month standards at least once in 2014-2017 and met the NPCR 24-month standards for all years 2014-2017; and (3) registries that did not meet the NPCR 24-month standards for all years 2014-2017. Statistical tests helped identify significant differences among registries that consistently, sometimes, or seldom/never achieved data standards. Results: Registries that always met the standards had a higher level of electronic reporting and a higher compliance with reporting among hospitals than registries that sometimes or seldom/never met the standards. Although not a statistically significant finding, the same registries also had a higher proportion of staffing positions filled, a higher proportion of certified tumor registrars, and more quality assurance and information technology staff. Conclusions: This information may be used to understand the importance of various factors and characteristics, including the adoption of electronic reporting, that may be associated with a registry's ability to consistently meet NPCR standards. The findings may be helpful in identifying best practices for processing high-quality cancer data.

Pursuing Data Modernization in Cancer Surveillance by Developing a Cloud-Based Computing Platform: Real-Time Cancer Case Collection.

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.

Population Heath Informatics Can Advance Interoperability: National Program of Cancer Registries Electronic Pathology Reporting Project.

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.

Using informatics to improve cancer surveillance.

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.

Cancer collection efforts in the United States provide clinically relevant data on all primary brain and other CNS tumors.

Cancer surveillance is critical for monitoring the burden of cancer and the progress in cancer control. The accuracy of these data is important for decision makers and others who determine resource allocation for cancer prevention and research. In the United States, cancer registration is conducted according to uniform data standards, which are updated and maintained by the North American Association of Central Cancer Registries. Underlying cancer registration efforts is a firm commitment to ensure that data are accurate, complete, and reflective of current clinical practices. Cancer registries ultimately depend on medical records that are generated for individual patients by clinicians to record newly diagnosed cases. For the cancer registration of brain and other CNS tumors, the Central Brain Tumor Registry of the United States is the self-appointed guardian of these data. In 2017, the Central Brain Tumor Registry of the United States took the initiative to promote the inclusion of molecular markers found in the 2016 WHO Classification of Tumours of the Central Nervous System into information collected by cancer registries. The complexities of executing this latest objective are presented according to the cancer registry standard-setting organizations whose collection practices for CNS tumors are directly affected.

Natural language processing systems for capturing and standardizing unstructured clinical information: A systematic review.

We followed a systematic approach based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses to identify existing clinical natural language processing (NLP) systems that generate structured information from unstructured free text. Seven literature databases were searched with a query combining the concepts of natural language processing and structured data capture. Two reviewers screened all records for relevance during two screening phases, and information about clinical NLP systems was collected from the final set of papers. A total of 7149 records (after removing duplicates) were retrieved and screened, and 86 were determined to fit the review criteria. These papers contained information about 71 different clinical NLP systems, which were then analyzed. The NLP systems address a wide variety of important clinical and research tasks. Certain tasks are well addressed by the existing systems, while others remain as open challenges that only a small number of systems attempt, such as extraction of temporal information or normalization of concepts to standard terminologies. This review has identified many NLP systems capable of processing clinical free text and generating structured output, and the information collected and evaluated here will be important for prioritizing development of new approaches for clinical NLP.

Implementation of the National Breast and Cervical Cancer Early Detection Program: the beginning.

In 1990, Congress passed the Breast and Cervical Cancer Mortality Prevention Act because of increases in the number of low-income and uninsured women being diagnosed with breast cancer. This act authorized the Centers for Disease Control and Prevention (CDC) to establish the National Breast and Cervical Cancer Early Detection Program (NBCCEDP) to provide high-quality and timely breast and cervical cancer screening and diagnostic services to low-income, uninsured women. The program started in 1991, and, in 1993, Congress amended the act to allow the CDC to fund American Indian and Alaska Native tribes and tribal organizations. By 1996, the program was providing cancer screening across the United States. To ensure appropriate delivery and monitoring of services, the program adopted detailed policies on program management, evidence-based guidelines for clinical services, a systematized clinical data system to track service quality, and key partnerships that expand the program's reach. The NBCCEDP currently funds 67 programs, including all 50 states, the District of Columbia, 5 US territories, and 11 tribes or tribal organizations.