Covid-19 pummeled public health agencies and organizations. Future crises, whether from infectious disease, extreme weather, or other sources, are likely to do the same unless they change their approach to public health reporting, data management, and information exchange.
Managing public health is not easy, especially in the United States. Not only is this country home to diverse populations that have varying genetic predispositions and cultural patterns of medical significance, it is also geographically huge. How epidemics or climate change affect California may be quite different from their impacts in Maine. The needs of Pittsburghers can vary widely from the needs of those living 50 miles away in rural Pennsylvania.
These factors necessitate that locally focused — community and statewide — public health policies and technology infrastructures be maintained for most efforts, and this is the right response in many cases. A top-down approach implemented at the federal level would miss important nuances and decrease the ability to meet people where they are. But a highly contagious virus, or climate change, do not recognize municipal, county, or state lines.
One problem with a localized public health approach, however, is the resulting patchwork of reporting and decision-making, which comes with enormous challenges for public health agencies, health care delivery organizations, and the developers supporting data collection and exchange. This is true under the best circumstances, let alone during a crisis.
People do not always seek treatment from the same care provider each time, and may even cross state lines to get care. Many large health care organizations operate in multiple states, and they must comply with differing privacy laws regarding patient consent for information exchange. Further, there are varied approaches to prescription drug monitoring programs, and providers also face a multitude of reporting requirements associated with public health which, during public health emergencies, quickly become daunting.
Even within the same state or region, state assemblies and public health entities frequently do not coordinate their efforts in making decisions about technology approaches, governance decisions about information exchange between localities, or which information must be captured and reported to public health registries by health care providers. During the early days of the pandemic, a large health system client of Altera Digital Health, which I work for, was reporting Covid-19 data to 18 different city, county, and state public health entities on a daily or weekly basis. Each entity wanted different information, so the health system could not simply share one report with all parties. This multiplied the reporting responsibilities for frontline medical providers, who were tasked with capturing the varying information about patients in the care process while also grappling with staff shortages and influxes of Covid-19 patients; it also created unnecessary work for the IT department and us as their partner.
Lessons from Israel
Not only does this fragmented approach to public health reporting create unnecessary burdens, but the health care delivery organizations supplying the information often derive no benefit from it. Very few public health systems offer bidirectional information flow back to the providers submitting data. As a result, hospitals and provider practices rarely receive closed-loop communication about public health data trends to watch. And even in today’s highly digitized world, when that information is shared with health care delivery organizations, it often comes in via fax.
Israel’s health IT response to Covid-19 is a great example of a connected, modern public health system in action. To be sure, with a population slightly larger than that of New York City, a land area approximately the size of New Jersey, and a national health care system, this is not an apples-to-oranges comparison. That said, Israel has invested for decades in an interoperable national health IT infrastructure and was able to pivot quickly when the pandemic began.
The country’s health ministry and research community were proactive in maximizing de-identified digital information available on Covid-19 patients across the country for research purposes. This enabled its epidemiologists and public health authorities to quickly gain insights on the spread of SARS-CoV-2, the virus that causes Covid-19, the comparative effectiveness of vaccines and retroviral treatments, and more.
The U.S., in comparison, had to rely on information and projections from other countries because its decentralized, heterogenous reporting systems made data analysis at the federal level slow, difficult, and imperfect — if not impossible.
To address this challenge, the Public Health Systems Data Task Force, established by the Office of the National Coordinator for Health Information Technology, issued a report in 2021 with 22 recommendations for health IT in the U.S. This included guidance for a “new normal” with public health as a strong partner with health care, and resources and data shared as appropriate.
The challenges to public health data maximization can be addressed if states focus on investing in health IT, reporting consistency, and current digital health technologies.
Many state public health departments — and the city and county entities under their purviews — currently use technologies that are decades old. They could instead leverage modern health IT that has been built to maximize collaborative, consensus-based standards. Thanks to substantial funds appropriated by Congress in 2020 and 2021, including for the Centers for Disease Control and Prevention’s new Data Modernization Initiative, a unique opportunity exists to invest in newer, modernized systems and break down data silos between public health and health care, with health IT as the conduit.
Electronic health records employ standards that provide mechanisms for how data are labeled, categorized, and exchanged. Harmonizing data across public health platforms would make it easier, faster, and less costly to exchange and gather information. And in times of crisis, greater efficiency can make a real difference.
Develop data reporting consistency
Building consensus around reporting for health care delivery organizations can also improve public health. Imagine how much less work hospitals and practices would have to expend if they could report once in a way that many entities — from public health offices at the city, county, state and federal levels to researchers and others — could benefit from. Researchers and the federal government could compare situations in different states and regions to make evidence-based decisions around public health responses with greater access to de-identified data.
Harmonized data plus cross-state consensus around reporting would have substantial benefits for clinical research and the early identification of public health emergencies, including and beyond infectious disease.
Many states are currently placing an emphasis on addressing inequitable social drivers of health as part of their larger public health strategies, and the opioid crisis has reached a critical point during the pandemic. Both are examples of other areas where inconsistent data capture and reporting requirements, as well as a variety of approaches to technology implementation from state to state, impede progress in improving patient outcomes and public health surveillance opportunities. These and other major issues could increasingly receive the attention they (and our communities) deserve, however, by building a better way to share the clinical data already collected en masse in the U.S.
The necessary changes would not come without challenges. It is not easy to replace hundreds of entrenched systems or existing policy approaches to data governance. And investing in public health infrastructure is not something local, state, and federal agencies routinely venture into. In fact, insufficient investment is what has gotten the country into the challenging position in which it found itself over the last two and a half years.
Seize health IT funding and technological opportunities
As the U.S. emerges from Covid-19, it has a once-in-a-generation opportunity to infuse funding made available by Congress into local, state, and federal public health infrastructure. But it is important to remember that Congressional funds can always be reappropriated, and short-term memory often befalls Congress as the urgency of a situation moves into the past.
If states collaborate on a consistent, standards-based health IT approach to public health reporting and consult in doing so the Office of the National Coordinator for Health Information Technology as subject matter experts in this area, they would be in a much stronger place when the next public health emergency arises, and even before that as public health leaders increase expectations of health care providers to report on social drivers of health and other data.
Leigh Burchell is the vice president of government affairs at Altera Digital Health and chair of the Electronic Health Records Association’s Public Policy Leadership Workgroup.