Like many aspects of public health, the effective, efficient movement of public health data has been chronically underfunded. Faced with this perpetual issue—combined with a sharp increase in data production from new laboratory techniques that have added great volumes of data to an overburdened system—APHL joined with the Council of State and Territorial Epidemiologists, the National Association of Public Health Statistics and Information Services, and the Health Information and Management Systems Society in 2019 to engage in the first serious effort to secure federal funding for improved handling of public health data.
APHL contributed to the production of materials that quickly and easily explained the problem and urged Congress to provide $1 billion over the next ten years, at a rate of $100 million per year. With these materials in hand, APHL met with interested partners on Capitol Hill to press the case for funding. It also organized a Hill briefing for Congressional staff where subject matter experts, such as APHL member Dr. Joanne Bartkus, presented on the challenges with existing data handling processes. Dr. Anne Schuchat, Principal Deputy Director of the US Centers for Disease Control and Prevention (CDC), highlighted these same challenges in virtually every hearing where she testified on public health emergencies.
These educational activities culminated when Congresswoman Rosa DeLauro took up data modernization as one of her key initiatives in the Labor-HHS appropriations bill. Congresswoman DeLauro successfully included the first installment of $100 million for CDC to pursue the data modernization initiative in the Labor-HHS appropriations bill for fiscal year (FY) 2020. This is an unparalleled achievement in the first year of any significant effort, and one made even more remarkable considering that data management is not a particularly trendy or exciting topic.
Though the Senate never produced a Labor-HHS bill for FY 2020, but indicated that it would not accept the House amount of $100 million for data modernization, APHL persevered, continuing to work closely with Senate staff to advance the funding of the data modernization initiative. Ultimately, Congresswoman DeLauro was able to include $50 million in the final version of the bill. The COVID-19 response allowed for an additional $500 million to be directed to data modernization, and it appears that the balance of the $1 billion ($450 million) could be included in the next emergency supplemental funding bill.
APHL continues to pursue additional annual federal funding for the data management initiative, beginning with fiscal year 2021, and production of the required CDC report to Congress detailing how these federal funds will be expended in 2020 and the spend plan for the subsequent nine years.
While APHL looks forward to more nimble response to public health emergencies, such as COVID-19, due to improved public health data management, the association remains energized by the benefits to result from the $550 million already allocated to the data modernization initiative.