Revision as of 16:23, 22 April 2024

Cancer Surveillance Informatics

Cancer surveillance informatics identifies and evaluates the integration of innovative technology into electronic data exchange to address cancer surveillance education, research, and practices.1,2 As such, it aims to capture data at one time point and enable its use across differing situations to meet other needs. Cancer registries require many diverse types of data. By using existing data, such as insurance claims, cancer registries can be updated with the required information without needing to create a new dataflow to capture and store that information in the cancer registry. An additional benefit of informatics is that it enables cancer data, including incidence and mortality trends, which is stored in the National Program of Cancer Registries, to be observed over time.3 Capturing this data across time helps to inform strategic planning initiatives including resource allocation as well as aims to move the state of the science forward through clinical and research programs.1

National Program of Cancer Registries

The National Program of Cancer Registries (NPCR) was established through the creation of the Cancer Registries Amendment Act in 1992. The creation of this law enabled the Center for Disease Control (CDC) to provide assistance including funding and technology services to cancer registries in 46 states, the District of Columbia, Puerto Rico, U.S. Virgin Islands, and the U.S. Pacific Island Jursidictions.1,3 This process created the CDC’s national cancer surveillance system.3

Cancer cases are collected and verified through NPCR resulting in the processing of over 1.67 million new reports of cancer incidence.4 Due to the large number of new cancer cases that are reported each year, a considerable amount of time is spent ensuring data quality and that all of the required information needed for the reporting case is present. It is estimated that it takes approximately 2 years to manually clean and obtain all relevant data before each cancer case can be submitted to the CDC.4,5

Public Health Data Modernization Initiative

To address the challenges in manual input of data and the average length of time it takes to submit a new case to the CDC, the CDC created the Public Health Data Modernization Initiative.5

The aims of this initiative are to:

• Develop a fully interoperable system

• Increase public health data sharing

• Harness public health workforce knowledge to improve informatics, information technology, and data science

Cancer surveillance cloud-based computing platform

To address interoperability, the CDC proposed the cancer surveillance cloud-based computing platform (CS-CBCP) in 2021.6 The goal of the project is to develop a cloud-based resource to decrease fragmentation through use of one application rather than multiple resources, automate record creation and completion, and standardize the central cancer reporting interface and NPCR reporting.5 CS-CBCP has three phases:6

• Phase 1 (completed): Central cancer registries provided NCPR with pathology results and helped to develop and test CS-CBCP.

• Phase 2 (July 1, 2022 – June 30, 2024): NPCR will work with central cancer registries to assess feasibility in real-world settings.

• Phase 3 (July 1, 2024 – TBD): Information learned in Phase 2 will be translated to aid in more CS-CBCPs to be opened at other central cancer registries with the goal of changing the reporting process to go directly to CS-CBCP.

References

1. Blumenthal, W., Alimi, T. O., Jones, S. F., Jones, D. E., Rogers, J. D., Benard, V. B., & Richardson, L. C. (2020). Using informatics to improve cancer surveillance. Journal of the American Medical Informatics Association, 27(9), 1488-1495.

2. Cancer Surveillance Informatics | CDC. (2023, August 16). https://www.cdc.gov/cancer/npcr/informatics/index.htm

3. About NPCR. (2019). https://www.cdc.gov/cancer/npcr/about.htm

4. Bernard, V. (2020, April 3). Cancer Registry Data: In the Clouds. Centers for Disease Control and Prevention. https://blogs.cdc.gov/cancer/2020/04/03/cancer-registry-data-in-the-clouds/

5. Jones, D. E., Alimi, T. O., Pordell, P., Tangka, F. K., Blumenthal, W., Jones, S. F., ... & Richardson, L. C. (2021). Pursuing data modernization in cancer surveillance by developing a cloud-based computing platform: real-time cancer case collection. JCO Clinical Cancer Informatics, 5, 24-29.

6. Cancer Surveillance Cloud-based Computing Platform | CDC. (2023, August 16). https://www.cdc.gov/cancer/npcr/data-modernization/cloud-based.htm

Submitted by Janae Kirsch