Improved State and Federal Data Policies Needed to Strengthen Public Health Systems

New Pew project looks to boost collection and sharing of critical data to better protect communities


Improved State and Federal Data Policies Needed to Strengthen Public Health Systems
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For 17 months from 2014 into 2015, residents of Flint, Michigan, faced potential lead poisoning after the city changed its source of drinking water. By one estimate, as many as 140,000 people—including as many as 12,000 children—may have been exposed to water with dangerously high levels of lead. Still, despite numerous cases of people sickened by prolonged exposure and significant public outcry, regulators initially could not agree whether there was an issue at all.

According to the state task force created in 2015 to investigate the emergency, the initial confusion came in part because screening for elevated levels of lead in blood was recommended only for 1- and 2-year-old children in communities with high risk of lead contamination. Therefore, any children who had been exposed and were above that age were initially missed. And that meant that the Flint health department was not gathering enough data to see the warning signs. It wasn’t until Dr. Mona Hanna-Attisha, director of the pediatric residency program at Hurley Medical Center in Flint, published data from a wider group of patients from her hospital’s electronic health record (EHR) system that it became clear that action was needed.

The task force’s final report, released in March 2016, listed several factors that worsened the crisis, noting that limited data and a lack of timely analysis by state agencies contributed to the slow response. This crisis demonstrates that state health agencies need real-time data from doctors and other health professionals to monitor and protect public health—and to respond promptly to emergencies. However, data alone is not enough; agencies also need to be able to quickly translate that information into action to avert widespread illness or long-term medical issues.

The water crisis in Flint provides one example of the importance of timely data—and how missing information can hamstring public health action. Similar gaps in electronic data sharing—particularly getting timely, complete information from hospitals, doctors, and laboratories to public health authorities—have proved to be a significant challenge during the COVID-19 pandemic, and undoubtedly made it harder for states and localities to address outbreaks, conduct contact tracing, and target vaccine distribution.

This problem is not new, and such inefficiencies can hamper responses to health challenges beyond the scope of a once-in-a-century pandemic. Other examples include efforts to reduce the spread of sexually transmitted infections (STIs) or diseases such as HIV/AIDS, understand environmental health concerns in different areas, and provide support to communities that face higher rates of conditions, such as asthma, that can be caused or exacerbated by socioeconomic factors.

Crucially, the technology to share data with health agencies, such as through EHRs, already exists, but not all health departments can easily accept electronic data. In addition, many states do not require information to be exchanged electronically.

To address these problems, The Pew Charitable Trusts is leveraging its expertise in health information technology to launch an initiative to help make this kind of data sharing seamless and widespread. The public health data improvement project will support development of federal and state policies to make it easier for hospitals, individual health care providers, and labs that perform tests for diseases such as COVID-19 to share information quickly and electronically with public health agencies. With readily available and accessible data, agencies can act quickly to protect their communities.

For example, many health agencies face problems with underreporting of diseases. The Centers for Disease Control and Prevention has estimated that before COVID-19, about 10% of reportable conditions were shared with a public health agency. To address this gap, Massachusetts implemented an electronic case reporting system for sexually transmitted infections, a process that began in 2006. By July 2011, all local health departments in the state mandated use of the system. In the system’s pilot implementation, the state recorded a 39% increase in reported chlamydia cases and a 53% jump in instances of gonorrhea.

Although the increases may be due, in part, to higher rates of risky behavior, more cases that would have otherwise gone unreported were now likely reaching public health departments. And that means a more complete and accurate assessment of STI rates. Having access to accurate, timely, and more complete data can help public health officials appropriately use limited resources to understand the breadth of the problem, address outbreaks, and provide targeted interventions.

In addition to partnering with federal and state policymakers, Pew plans to work with hospitals and office-based health care providers, as well as vendors of electronic health record systems, to encourage all of those parties to prioritize automated data reporting from EHRs directly to public health agencies. Government policy changes are essential, but they shouldn’t burden providers or overwhelm public health agencies that have limited resources.

The COVID-19 pandemic offered a prime example of why these changes cannot wait. This is not the first time such issues have caused problems and it may not be the last. The United States must learn the lessons from this and past health emergencies—and make sure the nation is prepared for the next one.

Molly Murray manages The Pew Charitable Trusts’ public health data improvement project.

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