Weak link in the administration’s data-driven COVID-19 response

The pandemic taught us that we need more timely and detailed data on many population subgroups of interest. The fiscal year 2023 budget request for the Department of Health and Human Services (HHS) addresses this need but has a gaping hole, as it had a year ago. A paltry increase of $1.5 million (0.9 percent) was put forward for the National Center for Health Statistics (NCHS) — HHS’ equivalent of the Department of Labor’s Bureau of Labor Statistics (BLS). The size of the increase is even more astounding given that the total budget for HHS is close to $1.6 trillion. A year ago, HHS proposed flat funding the agency at $175 million. Over the last dozen years, flat funding has caused the center’s purchasing power to decline 14 percent at a time when data collection, analysis and dissemination needed to be expanded.

NCHS may not be as widely known as the BLS or the U.S. Census Bureau, but it collects and disseminates core public health information on births, deaths, chronic and acute disease, disability and health care access and utilization. Examples of the breadth of what it produces include the number of deaths due to COVID-19 and opioids, the increase in the maternal mortality rate, especially for Black women, changes in health insurance coverage, differences in the prevalence of diabetes and hypertension by educational attainment, reasons for hospital stays and physician visits as well as the use of long-term care facilities.

Other parts of HHS also provide critical data on our nation’s health, but NCHS data constitute the backbone of our public health data infrastructure collecting, analyzing and disseminating trusted, objective and reliable statistics. Building back the infrastructure of NCHS requires expansion of current data collection platforms so they can provide more timely and more granular data on population subgroups defined by age, sex, race, socioeconomic characteristics and geography. Investment is also needed to develop new data collection and analysis tools in order to take advantage of emerging data sources, advances in machine learning, artificial intelligence and modeling while maintaining transparency and data quality.

Just as the timeliness and granularity of employment data, with information by state, if not county, and by sector or product category, help bolster our economy and job growth, more timely and granular health statistics would improve public health. Like politics, health and health care are local. To help our local communities improve the health of their constituents, they need to better understand the health status and susceptibilities of populations groups, their ability to access care and the effectiveness of that care or lack thereof.

Had investments been made in maintaining and modernizing the health data infrastructure we would have had information on COVID-related deaths, hospitalizations, ambulatory care visits and symptoms along with information on the impacts of the pandemic on wellbeing. This would have allowed for immediate tracking of the pandemic at it earliest stages and the continuing monitoring of response capabilities as it changed course. Without this investment, the data that were produced were delayed and in many cases they were of limited quality, which hampered our ability to control the pandemic and meet the health and health care needs of the population.

After the devastating hurricanes of 2017 and 2018, Congress recognized the need for improved data in the Disaster Recovery Reform Act of 2018, requiring FEMA to fund a National Academies report on improving morbidity and mortality reporting during national disasters. Its charge expanded in 2020 to include pandemics, the resulting report, which one of us (Rothwell) coauthored, provided a definitive list of recommendations both short and long term. The list included: improvement in vital statistics reporting, use of electronic health records for monitoring, linking of existing data, expanded use of surveys, improved data standards improved data granularity, as well as drastically improved responsiveness of data and statistical systems. In those recommendations, no HHS agency was mentioned more than NCHS, apparently an observation lost on HHS in budget request preparation.

Our aim is to strengthen HHS’s pandemic response, its readiness for the next public health challenge and its ability to monitor health and health care at all times. As former NCHS leaders with decades of experience in the agency, we are used to NCHS being the forgotten stepchild in HHS planning and response. But we also know NCHS is the agency that can produce when engaged and given the resources to do so. To round out its “data-driven response to COVID-19,” HHS must explicitly include investment in NCHS. Congress must prioritize a modest increase of $30 million to the NCHS budget.

Jennifer Madans served as the National Center for Health Statistics (NCHS) associate director for science, acting deputy director, as well as acting director, retiring from federal service in December 2020.

Charles J. Rothwell was director of NCHS from 2013 to 2018, capping a career in federal service that started in 1987.

They are both on the executive committee for the Friends of NCHS, which is advocating $210 million for NCHS in fiscal year 2023 with detailed investment recommendations and the support by supported by 56 stakeholder organizations across the public health community.