The ability to gather and track disease-related data is critical for improving public health. Specifically, disease surveillance databases are essential for identifying public health resource needs, tracking disease trends over time, determining the impact of programs and medications designed to prevent or treat disease, and informing research around the development of new treatments and interventions. For cancer — currently the second leading cause of death in the United States — these databases provide public health organizations a reliable way to track cancer incidence, prevalence, and mortality across communities, states, and the nation, contributing to collective knowledge of the disease. Playing a key role in the aggregation and surveillance of these data at the national level, the Centers for Disease Control and Prevention (CDC) works with states to oversee the National Program of Cancer Registries and provide funding for this work.
In Michigan, the Michigan Department of Health and Human Services (MDHHS) Division for Vital Records and Health Statistics is responsible for serving in this critical function, maintaining the Michigan Cancer Surveillance Program (MCSP), with funding from the CDC. With limited additional resources, MDHHS faced a significant challenge: ensuring the quality and standardization of data collection throughout the state as well as data from the Detroit Cancer Surveillance program, which operates in the tri-county Detroit area and is separate from other state surveillance efforts.
To streamline the flow of these data, MDHHS turned to Altarum. Since 2013, we have provided the technical support to help the department take on this endeavor. With the right processes and applications in place, we have improved MDHHS’s ability to successfully collect, validate, prepare, and consolidate cancer surveillance data collected throughout the state. But, we didn’t stop there.
Our approach is all-encompassing, including a heavy focus on quality assurance. Through a partnership with Certified Tumor Registrars (CTRs) across Michigan and at the Detroit Cancer Surveillance program, we lead regular data submission cycles to confirm the quality of cancer surveillance data. Because cancer data are complex — containing genetic information, stage information, and tumor sizing, in addition to disease type, comorbidities, and demographics — we put them through rigorous evaluation to ensure they are accurate and complete. This step helps verify whether or not data can be useful in surveillance and research efforts. Altarum examines the data and develops database scripts to, first, detect errors before submission and, second, programmatically fix those errors to ensure the data are sound.
By improving the speed and accuracy of data submission, we made it easier for scientists and public health officials to efficiently and promptly access high-quality cancer data to better treat this complex disease.
For the quality, completeness, and timeliness of 2019 cancer data, the MCSP received Gold Certification from the North American Association of Central Cancer Registries and continues year after year to be named a Registry of Distinction by the CDC National Program of Cancer Registries.