Behind the Scenes: CPIC's Data Engine is More Than Just Numbers
|One of CPIC’s most powerful assets is its Greater Bay Area Cancer Registry (GBACR), a major data resource for cancer researchers, and source of local cancer statistics.
Cancer diagnoses are reportable by law in all 50 states. But gathering the information needed for accurate registration is not easy, especially when many hospitals still have paper medical charts. Meet Karen DeNave, Certified Tumor Registrar. Karen (pictured left) has been a member of CPIC’s Greater Bay Area Cancer Registry staff for over 25 years. The data management expertise of Karen and her fellow registrars plays a vital role in the nation’s cancer prevention and treatment efforts.
Along with the 11 other certified tumor registrars at CPIC, Karen collects very detailed data on cancer cases from medical records provided by hospitals, doctors, and other medical facilities. She compiles the information, capturing a complete standardized history of diagnosis, treatment and status of each cancer patient in the nine-county Greater Bay Area. This work bridges the gap in patient records when patients change hospitals or doctors by capturing a complete summary of the patient’s disease through their lifetime. All the data are stored under secure conditions with strict regulations that protect confidentiality.
Because the population of the Greater Bay Area region includes persons of many different racial/ethnic and socioeconomic backgrounds, the GBACR data provide opportunities to learn how such characteristics may be related to cancer care, survival, causes and prevention. Researchers at CPIC and other institutions, as well as state and national public health officials, use the data Karen and CPIC’s other registrars collect to study cancer risk factors and develop cancer prevention programs.
The GBACR data on cancer incidence and mortality is also fundamental to documents that serve as report cards on how this region and the state of California are doing in the fight against cancer. Without the work of Karen and her colleagues, reports such as Cancer Facts & Figures, distributed by the American Cancer Society, would not be possible.
Over the course of her 41-year career, Karen has observed many changes and advances in the cancer registry field. She remembers struggling to read handwritten data reports and manually counting numbers of data on paper back in 1972. Now, with the use of computers and networked data, the system is much more precise and consistent, says Karen.
But being a cancer registrar is more than just working with numbers and data. It’s about people and their personal experience with cancer.
“Over the past few years, one of my own family members and two of my friends have been diagnosed and treated for fairly rare forms of cancer,” says Karen. “Seeing how this disease affects the patients whose case information I collect and also my own family and friends brings an enhanced sense of purpose to my work and inspires me to continue honing my expertise and performing my duties so no one else will have to face this disease."
© Cancer Prevention Institute of California