Successful modernization will draw on lessons learned from clinical health data standardization and health information exchange.
The U.S. response to the COVID-19 pandemic has been hampered by slow and inconsistent reporting of critical public health data. America’s federated model for public health, which is anchored by dozens of different state and territorial health departments, lacks the capabilities of more integrated national systems like those of England and Israel. Incomplete implementation of data standards has not only delayed the reporting of case information and lab results but also limited the integration of public health data with clinical treatment and demographic information — further impairing the policy response. These challenges are compounded in localities in which underfunding of staff and technology causes disparities in data collection. The lagging performance of U.S. public health data infrastructure is well illustrated by the fact that vaccine regulators have had to rely on Israeli and United Kingdom data, rather than information from the U.S. population.
Policymakers are taking steps to reduce this fragmentation and improve the timeliness and actionability of public health data. From the White House to the Department of Health and Human Services (HHS) and the Centers for Disease Control (CDC), the Biden administration has launched initiatives to standardize and modernize public health data. This January, Democrats and Republicans on the Senate Committee on Health, Education, Labor and Pensions jointly proposed legislation — the PREVENT Pandemics Act — that establishes priorities for improvements to federal and state public health data and real-time situational awareness.
Data standardization is a cornerstone of these reforms. U.S. public health systems have traditionally used a localized case reporting approach, in which clinical health providers, labs, schools, and employers relay data to county or state public health departments on specific diseases, using reporting formats determined by each jurisdiction. State health departments in turn report a subset of notifiable diseases to the CDC. But this disjointed approach causes problems when infectious outbreaks cross state lines. States and jurisdictions should standardize such reports to collect similar information relevant to each specific disease. COVID-19 has likewise shown the benefits of harmonizing vaccination information collected in state-administered immunization information systems. Such standardization should also include reliable identity and contact information, along with the demographic information necessary for equitable population-level policy.
Efforts to harmonize public health information can build on HHS’ prior experience with patient electronic health records, which previously were similarly fragmented across clinical care provider systems. Working toward nationally interoperable patient records, HHS has successfully implemented requirements for what clinical treatment records must include through the U.S. Core Data for Interoperability (USCDI). This standardization also extends to demographic and social determinants of health information. The CDC and HHS are now using a similar stakeholder process to begin harmonizing data collected in public health records through the newly-announced USCDI+ initiative. Crucially, the federal government’s new approach directly addresses the need for better integration between clinical and public health data standards.
Public health data reformers must also focus on improving technical mechanisms for data transfer to expedite reporting between state and federal public health authorities. By harmonizing reporting formats, health departments can eliminate the challenge federal authorities face in integrating such data for national public health decision making — and reduce duplicative federal reporting requirements. Public health will benefit from experience gained from longstanding HHS initiatives to enhance exchange of patient data between clinical care providers. Interoperable exchange formats and web-centric standards for access and retrieval not only allow data to be more efficiently reported but would also allow public health officials to follow up with additional questions for clinical care providers or directly monitor preliminary emergency room reports during an emerging outbreak. The exchange of data could ultimately become bi-directional: clinical providers could not only expedite disease-related reports to public health but could also reach back to state public health databases to request missing patient immunization records or identify vulnerable patients for vaccination outreach. Similar to their approach with USCDI+, HHS and the CDC are now jointly developing exchange standards geared to public health use cases.
Health information exchanges are another asset for public health data modernization, serving as a technical bridge to clinical data systems. Health information exchanges (HIEs) automate patient record access across different providers to improve care delivery and reduce cost. Although many HIEs are private, some states have chartered public, non-profit HIEs. For example, New York’s statewide exchange links smaller in-state exchanges, while Maryland’s Chesapeake Regional Information System for Our Patients (CRISP) stretches across state boundaries. Going beyond clinical care, HIEs also make it possible to more easily aggregate patient information, enabling better analysis of population health. Indiana’s HIE, for example, has not only made possible measurement of statewide pediatric asthma trends but also identified a 2019 surge in teen lung injury from vaping. HHS envisions an eventual national approach to data exchange by public and private HIEs through a Trusted Exchange Framework.
During the COVID-19 pandemic, HIEs have been important data intermediaries between care providers and public health. The CRISP HIE helped Maryland’s Department of Health match individual vaccination records with clinical care and payment claims records identifying patient demographics and chronic conditions. This enabled better vaccination outreach to the most vulnerable as well as public health monitoring of COVID-19 hospitalizations. Indiana’s HIE aggregated statewide COVID-19 case data and lab test results to identify localized outbreaks faster. HHS’ public health data systems task force anticipates that HIEs can better integrate demographic and disease condition information missing from lab testing and vaccination records or automate processes for early detection of disease outbreaks.
Successful public health data modernization must both improve data standardization and interoperability as well as take advantage of the capacities of HIEs to rapidly integrate relevant patient data for better case reporting and clinical care. The obstacles to this evolution remain formidable: federal and state funding for the transformation of the public health workforce and its infrastructure is too often insufficient and short term. When standardization requirements are tied to such funding, the implementation challenges must be considered for hard-pressed care providers and the private stakeholders that enable data interchange. To retain public trust, privacy and security protections for individual health information must also continue to be safeguarded and the benefits of data sharing explained. But while the lessons of the COVID-19 pandemic are foremost in the minds of policymakers and the public, there is an opportunity to make bold changes to embrace modernization to better prepare for the next pandemic.
Chuck Curran is a data policy consultant currently participating in the U.S. Health Law Certificate program at Georgetown University Law Center.