Public Health Agencies Need Better Data to Promote Well Being for All

We all deserve to lead healthy lives, but many factors that affect our well-being are beyond our control. Biased systems and policies deny people access to clean air and water, livable wages, health care, and other basic needs—and, as a result, health inequities emerge.

For example, COVID-19 is at least twice as likely to kill Black, Hispanic, and Native Americans and nearly three times as likely to hospitalize them as White people the same age partly because of where people in these communities work and live. Inequities also affect veterans, people with disabilities, Americans who live in rural areas, people who identify as LGBTQ+, and others. This violates a core mission of public health professionals: to create conditions that give all people the opportunity to achieve their best health.

Just as a doctor reads patients’ vital signs to gauge their health and guide any treatment, public health agencies rely on data to measure a community’s health, develop policies to strengthen it, and ensure that the interventions work. Unfortunately, these agencies need more reliable, timely, and granular data than they often get to identify and address disparities.

To improve health equity, the Robert Wood Johnson Foundation’s National Commission to Transform Public Health Data Systems recently released a set of recommendations for government, the private sector, and other stakeholders to improve public health data sharing. The commission makes three overarching suggestions:

• Elevate the importance of public health data for building a more just and equitable health system.
• Design policies and invest in communities to ensure public health data is transparent, accessible, and easily shared with those who need access to it.
• Ensure that policymakers can use data to identify and remediate structural racism and other inequities that undermine public health.

In October 2021, The Pew Charitable Trusts launched a project to help achieve these goals. Through research, technical assistance, and advocacy, we will work to enable and encourage health care providers in doctors’ offices, hospitals, and health systems to electronically share detailed and standardized data about their patients with public health agencies while following relevant privacy protections. In addition to submitting data on diseases, injuries, and treatment outcomes, providers should send patients’ self-reported demographic information such as race, ethnicity, age, income, and ZIP code, so that public health agencies can identify and address causes of disparities related to these factors.

The good news is that trillions of gigabytes of data are available to inform public health interventions. The bad news is that the policies and infrastructure for collecting them are out of date; many states still allow providers to share data via fax, snail mail, and telephone. Using these outdated technologies increases the risk of human error and slows the flow of information, which can hobble public health responses. Even when data is shared, important demographic information is too often omitted. For example, 85% of all COVID-19 reports that state health agencies received in the early stages of the pandemic did not include the individual’s race or ethnicity, and half were sent without their addresses.

Federal and state lawmakers and regulators can help change this situation:

• First, federal regulators should ensure that the record-keeping tools used by nearly all health care providers allow easy—even automated—data-sharing with public health agencies. The Office of the National Coordinator for Health Information Technology can mandate that developers and sellers of electronic health record (EHR) systems build in functions that let providers collect and report electronic, standardized, and demographically detailed data. While many EHR products can already do so, some cannot.
• Second, federal policymakers should encourage hospitals and doctors’ offices to use these reporting tools by making Medicare reimbursement payments contingent on electronically sharing data with public health agencies. State regulators with oversight of medical practices can take it a step further and apply comparable requirements to providers who don’t participate in Medicare.
• Finally, through appropriations and legislation, state policymakers should provide public health agencies with adequate resources and authority to analyze information from health care systems and respond with data-driven interventions to protect their communities from risks to their health.

Illness anywhere threatens wellness everywhere. Health disparities cost the United States more than $100 billion every year. Fortunately, the opposite is also true: A just and equitable health system lifts everyone up. And it must start with more and better data.

Kathy Talkington directs The Pew Charitable Trusts’ public health programs.