By William A. Haseltine
FAIRFIELD COUNTY, CT – With COVID-19 still a pervasive threat and monkeypox cases increasing alongside existing chronic health epidemics, building strong and responsive public health systems has never been more important. But it will require developing effective data management, continuing sustained investment and training, and building trust through clear communication and community engagement. Here I want to focus on the data problem.
Standardized and comprehensive health data is at the heart of any public health system, whether monitoring infectious diseases or understanding why certain diseases affect certain populations more than others. Accurate and easily accessible health data is needed to understand real-time clinical information, 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 In the absence of universal standards, many public health systems and practitioners rely on outdated forms of communication such as paper and fax, which do not allow for rapid sharing.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 rely on the latest data to answer basic questions, such as the death rate of COVID-19 by patient variables.
In the United States, a recent report by the Commonwealth Fund Commission on a National Public Health System found that “only 3% of local health departments reported that information systems are all interoperable, a limitation that hampers both day-to-day prevention work and coordinated responses. “Because America has a federated model of public health, drawing on the efforts of dozens of different state and territory health departments, it lacks the capabilities of more integrated national systems like those that the found in England and Israel. As a result, US vaccine regulators have had to rely on Israeli and British data, rather than US population data.
The Commonwealth Fund commission calls for a “truly national public health system that works day-to-day, with coordinated leadership at the federal level and with cohesive state and local capacity”. But he is careful to recognize that, despite the need for better national coordination, local and state health departments should maintain their current level of scrutiny, because they know their own communities best.
One way to achieve this balance is to establish comprehensive and binding national standards for national and local health data, rather than encouraging voluntary and piecemeal forms of data sharing. Although hospitals and other healthcare providers have been sharing data throughout the pandemic, the information they have reported tends not to be able to be linked between different systems, due to the use of different definitions and different collection methods. This makes it difficult and time-consuming for recipients at the state or federal level to receive, aggregate, and analyze current data.
So, in addition to setting standards for data, we need to develop and implement standardized national systems for collecting and sharing data. This would involve universal identifiers for individual patients and end users, as well as a standardized infrastructure to integrate equivalent test lab results. We also need to ensure that local, state and tribal health departments have consistent funding to fully participate in such an initiative.
There is evidence that this approach can work. For example, thanks to the efforts of the Obama administration, the number of hospitals using electronic records grew from 9% in 2008 to 84% in 2015. Unfortunately, his administration underestimated the critical need for standardization.
The same data collection issues that have hampered the COVID-19 response are also occurring with monkeypox, further underscoring the urgent need for reform. While the Centers for Disease Control and Prevention recently shared a first public look at the demographics of monkeypox cases, the agency only has detailed information on about half of the reported cases because the decision whether or not to share the data belongs entirely to the state authorities.
But even for states that are motivated to share data with the CDC, the current infrastructure is flawed. Although the CDC has data on how monkeypox vaccines were distributed between states, it does not have data on who was vaccinated and does not yet have the authority to collect such data. This lack of local data makes it difficult to predict the trajectory of disease or make public health recommendations based on vaccine effectiveness.
Additionally, as the CDC focuses on modernizing access to reportable disease data and lab test results, it is underutilizing other rich data sources. These include records of visits, hospitalizations, medications, and outcomes from payers (including the Centers for Medicare and Medicaid Services), as well as numbers from electronic health record systems and information exchanges. about health. While ensuring patient confidentiality is paramount, this data can be anonymized to highlight trends and provide valuable insights into public health issues beyond infectious disease surveillance. For example, the Indiana Health System Exchange has been able to monitor not only statewide trends in pediatric asthma, but also flare-ups of adolescent lung injury from vaping.
Finally, public health departments can also exchange anonymized data with other government departments – such as those overseeing housing and education – to understand how social determinants of health relate to certain clinical populations and trends.
Implementing these changes and developing an accessible and standardized national public health database could transform millions of health outcomes and save many lives. But that won’t happen overnight. Work must begin immediately.
Copyright: Project Syndicate, 2022.