Fixing our public-health data problem

FAIRFIELD COUNTY, CT  —  With COVID-19 still an ever-present threat and monkeypox cases rising alongside existing chronic health epidemics, building strong, responsive public health systems has never been more important. But it will require developing effective data management, pursuing sustained investment and training, and building trust through clear communication and community engagement. Here, I want to focus on the data problem.

Standardised, comprehensive health data is at the heart of any public-health system, whether the task is conducting infectious-disease surveillance or understanding why some diseases affect certain populations more than others. Easily accessible, accurate health data is necessary to understand clinical information in real time, prevent medical errors, and make decisions about public-health measures before, during, and after times of crisis.

Our response to the COVID-19 pandemic has clearly been hampered by the slow and inconsistent reporting of critical public-health data. In the absence of universal standards, many public-health systems and practitioners rely on outmoded forms of communication such as paper and fax, which do not allow for rapid sharing. More than two years into the pandemic, we still cannot easily draw on the latest data to answer basic questions, such as what COVID-19’s mortality rate is according to patient variables.

In the United States, a recent report from the Commonwealth Fund Commission on a National Public Health System finds that, “Only 3 per cent of local health departments reported that information systems are all interoperable, a limitation that hampers both daily prevention work and coordinated responses.” Because America has a federated model for public health, relying on the efforts of dozens of different state and territorial health departments, it lacks the capabilities of more integrated national systems like those found in England and Israel. Hence, US vaccine regulators have had to rely on Israeli and UK data, rather than data on the US population.

The Commonwealth Fund commission calls for a “truly national public health system that functions day to day, with coordinated leadership at the federal level and with consistent state and local capacity”. But it is careful to acknowledge that, despite the need for better national coordination, local and state health departments should maintain their current level of control, since they ultimately know their own communities best.

One way to achieve this balance is by setting comprehensive and binding national standards for state and local health data, rather than incentivising voluntary, piecemeal forms of data exchange. Though hospitals and other healthcare providers have shared data throughout the pandemic, the information they have reported tends not to be linkable across different systems, owing to the use of different definitions and different methods of collection. This makes it challenging and time-consuming for recipients at either the state or federal level to receive, aggregate, and analyse current data.

Thus, in addition to setting standards for the data, we need to develop and implement national standardised data-collection and data-sharing systems. This would involve universal identifiers for individual patients and end-users, as well as a standardised infrastructure to integrate laboratory results from equivalent tests. We also need to ensure that local, state and tribal health departments have consistent funding to participate fully in any such initiative.

There is evidence that this approach can work. For example, owing to the Obama administration’s efforts, the number of hospitals using electronic records grew from 9 per cent in 2008 to 84 per cent in 2015. Unfortunately, his administration underestimated the critical need for standardisation.

The same data-collection issues that hampered the response to COVID-19 are also occurring with monkeypox, further highlighting the urgent need for reforms. While the Centres for Disease Control and Prevention recently shared a first public look at monkeypox case demographics, the agency has detailed information on only about half of reported cases, because deciding whether to share the data is completely up to state-level authorities.

But even for states that are motivated to share data with the CDC, the current infrastructure is flawed. While the CDC does have data on how monkeypox vaccines have been distributed among the states, it has no data on who has been vaccinated, and it does not yet have the authority to collect such data. This lack of local data makes it difficult to forecast the trajectory of the disease or to make public-health recommendations based on the efficacy of the vaccines.

Moreover, while the CDC is focused on modernising access to reportable disease data and laboratory test results, it is underutilising other rich data sources. These include records on visits, hospitalisations, medications and outcomes from payers (including the Centres for Medicare and Medicaid Services), and figures from electronic health-records systems and health information exchanges. While ensuring patient privacy is paramount, these data can be anonymised to highlight trends and provide valuable insights into public-health issues beyond infectious-disease surveillance. For example, Indiana’s health system exchange has made it possible to monitor not just state-wide pediatric asthma trends but also surges in teen lung injuries from vaping.

Finally, public-health departments can also exchange anonymised data with other government departments, such as those overseeing housing and education, to understand how social determinants of health are linked to certain populations and clinical trends.

Implementing these changes and developing an accessible, standardised national public-health database could transform millions of health outcomes and save many lives. But it won’t happen overnight. The work must start immediately.

William A. Haseltine, a scientist, biotech entrepreneur, and infectious disease expert, is chair and president of the global health think tank ACCESS Health International. Copyright: Project Syndicate, 2022. www.project-syndicate.org