The data deficits of COVID-19 mirror those of cancer

As the president of the American Cancer Society Cancer Action Network, I am all too familiar with the fight for complete data to protect public health. Cancer and COVID-19 are two of the three leading causes of death in 2020 — each costing us hundreds of thousands of lives. Yet each is missing key data points.

It is unacceptable that we aren’t armed with the information we need to fight them. Moving forward, policymakers must make it a priority to ensure accurate, timely data collection for these deadly diseases.

There are many issues with COVID-19 data collection. For example, nationally, federal officials have only reported race and ethnicity data for half of the COVID-19 cases. Back in July, officials abruptly ordered hospitals to report COVID-19 to a federal database instead of the CDC, causing mass confusion. Weeks later, the administration reversed the decision. And in September, officials were accused of altering CDC data.

Cancer data, too, has dangerous gaps. One primary problem concerns the National Program of Cancer Registries at the CDC, which collects cancer case and death rate data from the vast majority of states. This data is immensely helpful to combat cancer. But right now, there is a two year-delay between when data are initially collected and when the system can report them. That means there’s a significant lag for experts to identify major issues and potential solutions.

Data is absolutely paramount to effective, equitable health policymaking. This information enables experts to identify disease hotspots, vulnerable groups, general disease trends, and more. Armed with these facts and figures, policymakers can develop significantly more effective strategies to combat health issues.

Consider how cancer registries, while flawed, have helped thus far. In Washington, using data from registries, experts discovered that women in certain counties had disproportionately high rates of late-stage breast cancer. Additionally, Black, Hispanic, and American Native/Alaska-Native women were more likely to develop breast cancer than other racial and ethnic groups. As a result, additional funds for breast cancer education and screening were distributed to high-risk areas. The results were remarkable: Late-stage breast cancer declined, and survival rates for women with breast cancer increased.

Meanwhile, in Louisiana, registry data uncovered increasing cases of a specific type of skin cancer among low-income residents who were generally treated at public hospitals. At the time, patients waited an alarming five months from an initial doctor’s visit to receive a diagnosis. Then, they had to wait an additional 12 weeks to get treatment. As a result, hospitals looked for ways to identify patients with this cancer more quickly and significantly shortened delays for treatment. 

Making this data available faster would go a long way to improve cancer outcomes. And seriously revamping our COVID-19 data collection would yield major benefits. We’re pushing hard for both. For example, we recently joined the We Must Count coalition, a group of health and racial equity organizations fighting for accurate COVID-19 data. Additionally, for years, ACS CAN have joined the public health community to advocate for additional funding at the federal and state level to modernize the public health data infrastructure. In fiscal 2020, the community was successful in convincing lawmakers to provide $20 million, but more funding is critical to address the continued gaps. That’s why we’re calling on Congress to devote at least $70 million to modernize its data infrastructure and create a cloud-based system to record cancer data in real-time.

Massive public health issues require comprehensive, all-encompassing strategies to fight them. With complete data on COVID-19 and cancer, we can save lives.

Lisa Lacasse is the president of the American Cancer Society Cancer Action Network (ACS CAN), the nonprofit, nonpartisan advocacy affiliate of the American Cancer Society (ACS).