To transform public health, we must reimagine our data systems

Richard E. Besser, MD. President and CEO of the Robert Wood Johnson Foundation

One of the most sobering statistics of the pandemic arrived this summer: Black and Latino people in the U.S. experienced a 2.9- and 3-year decline in life expectancy, respectively, in 2020, compared with a 1.2-year decline for White people. This was all too predictable at the dawn of the pandemic. Systemic and structural racism have cemented inequities into America’s foundation, and the repercussions play out cruelly during periods of both crisis and calm.

In large part due to structural racism, Black, Latino, and Indigenous workers are disproportionately represented in jobs that don’t pay a living wage, provide health insurance, or guarantee paid sick time off. During the pandemic, workers in these jobs have lacked the resources to be able to stay home and stay safe. Black and Latino residents have been segregated to neighborhoods of disinvestment, through a legacy of discriminatory housing—from policies such as redlining and residential covenants designed to keep people of color out of certain neighborhoods. Their children are more likely to attend under-resourced schools starved by funding formulas based on local property taxes. They are less likely to have access to health care and nutritious foods. They are victims of an unfair and unjust criminal justice system.

Addressing systemic racism and dismantling the many barriers to equity will benefit these communities, of course. But doing so will help all people because these systems and structures impact each of us. We must address our nation’s historic failures for the good of everyone. The pandemic has provided a case study of this, in fact. The structural failures that left some people more vulnerable had wider impacts in our communities through the spread of the virus, the economic fallout, the closing of schools and ultimately the loss of life.

Covid-19 has once again exposed how racism and where one lives determine, to a large degree, a person’s life trajectory in America. It has shined a critical light on the need to radically transform our public health data systems if we truly want to create an equitable society. Data systems that only document racial health disparities without measuring the inequities and racism that fuel them contribute to the problem. This failure results in the misperception that health disparities are biological or primarily behavioral rather than caused by the structures and systems of an inequitable society.

We use the category of race as a means of identifying and measuring disparities. However, race has no biological meaning; it is a social construct designed intentionally to relegate people and communities of color to second-class status and to privilege white people. It is the racism that accompanies racial hierarchy that has profound health consequences. The gaps and failures in our public health data systems today, in fact, stigmatize entire communities instead of doing what data can and should do: provide the roadmap and path toward systemic change.

One of the pandemic’s many lessons, then, is that we must reimagine how we think about, collect, and then act on public health data. And it must begin by centering equity in these efforts to eliminate racist systems and structures. The pandemic’s health disparities are essentially a microcosm of the disparities we have seen repeatedly throughout our history. We have known for years that these disparities persist, yet the U.S. still does not have complete, real-time data to identify and sufficiently tackle such disparities, and to address community needs down to the ZIP code level. We need a robust, modern data infrastructure that collects the data we need and connects the dots between public health data and other sectors—housing, education, employment, for starters—to create a more equitable future.

These are the things we can and must change, and it’s why RWJF created the first-of-its-kind National Commission to Transform Public Health Data Systems to reimagine how data are collected, shared, and used. This 16-member commission—composed of diverse innovators and experts across multiple sectors—was charged with identifying what public and private innovations are needed to create the data infrastructure that can lead to health equity in the United States. The commission’s just-released blueprint for change is bold, comprehensive and endorses the principle that our data systems must provide indicators of the health harms caused by racism and other forms of discrimination and the evidence to eliminate these inequalities. The Robert Wood Johnson Foundation is providing $50 million toward implementing the commission’s recommendations, which include:

• Improving the collection of self-reported data by race, ethnicity, income, education, gender identity, sexual orientation, disability, and social position in communities across the nation. This will allow for the necessary granularity to address the specific health equity challenges within particular groups.
• Developing powerful local data collaboratives that link social determinants of health that are now missing in most governmental public health data sets. This will help local health departments, in partnership with community organizations, prioritize and address local health challenges.
• Building community-academic partnerships with historically black colleges and universities in the Gulf Coast region of the U.S. to expand capacity in the creation, collection, analysis and interpretation of data. The goal of this work will be to transform local public health data systems to address health equity.

As Mary Bassett, MD, MPH, the incoming Commissioner of the New York State Department of Health, said, “We need better ways of capturing the concept of structural racism, but most of all we need the field to discipline itself to change the narrative of measured racial inequities to include racism and abandon reflexive pursuit of biological/genetic explanations.”

Turning these words into action will require commitments and contributions from all sectors—governments, businesses, philanthropies and communities—and this work must begin now. Properly measuring and understanding racism and investing in the public health infrastructure to collect data and aggregate and analyze are critical initial steps toward ensuring every person in the United States has a fair and just opportunity to live a healthy life. When we do so, everyone benefits.

This must not just be our aspiration. It must be our nation’s mission.