Policymakers use a variety of data to make public health decisions. But during the COVID-19 pandemic, some state legislators and other decision-makers faced large data gaps across systems and jurisdictions.
Comprehensive public health data helps determine disease mitigation approaches, strategies concerning populations experiencing disproportionate cases of disease, and deployment of medical resources.
In a survey of health system executives before the pandemic, respondents noted challenges in delivering data to public health agencies. Forty-one percent reported that the largest barrier to electronic lab reporting and syndromic surveillance (intelligence to aid in early warning and monitoring of disease outbreaks) was the lack of public health infrastructure to electronically receive data. The Office of the National Coordinator for Health Information Technology reported that 7 in 10 hospitals encountered one or more challenges in their electronic reporting to public health agencies. During the pandemic, in some jurisdictions, aggregating data such as test results and potential cases of COVID-19 had to be done in a patchwork way—in some cases, sharing data via fax or phone.
The pandemic highlighted the importance of data sharing. Responses to public health crises require the collection and analysis of data from hospitals, laboratories and public health departments. For example, sharing of electronic health record data from hospitals to public health agencies offers the potential to quickly transmit information to provide greater clarity on disease incidence. When data systems are insufficient or standards are not in place to ensure effective data transfer between systems, workarounds can be expensive. In addition, timely and impactful interventions might be delayed.
Data interoperability—the capacity of different information technology systems and networks to communicate with one another—can help to ensure accurate and efficient data exchange. Barriers to interoperability include information blocking, which occurs when an entity knowingly or unreasonably interferes with the exchange or use of electronic health information. Information blocking can prevent access to timely information needed to manage patient health conditions and can hinder data from being shared and analyzed for policymaking purposes.
Key provisions of the 21st Century Cures Act, passed in 2016 to promote health care interoperability, are being implemented this year. The act is intended to improve and modernize health information technology in three main ways:
- Continued implementation and enforcement of regulations concerning information blocking to make information-sharing practices a priority.
- Standardization of application programming interfaces to make information sharing easier with certified electronic health record systems.
- Trusted Exchange Framework and Common Agreement to create a nationwide policy and infrastructure backbone to ease information sharing across health record networks and other health IT systems.
The CDC’s Data Modernization Initiative aims to ensure timelier, more complete and accessible public health data while unifying infrastructure for better decision-making. The initiative is a multiyear effort to modernize core data and infrastructure across the federal and state public health landscape. The Office of the National Coordinator for Health Information Technology is collaborating with the CDC on the modernization project as it ties into the office’s pursuit of creating an open architecture based on industry standards.
States have responded to the need for improved public health data systems with legislation and appropriations in 2021 and 2022.
Some states are using American Rescue Plan Act funds to jump-start public health data infrastructure investments. For example, Virginia allocated $20 million to the department of health to modernize administrative systems and software, and to digitize and automate records processes to create response capacity during future emergencies. States including Nevada and Washington also allocated ARPA funds for enhancing public health data systems.
At least two states improved health information exchanges or networks. Nebraska passed legislation to require health care facilities and health insurers to participate in the state’s health information exchange by sharing clinical data, including electronic health records. Maryland passed legislation that requires prescription drug dispensers to provide data on non-controlled drug prescriptions to the state information exchange to aid in the evaluation of public health interventions and health equity. The bill also establishes a consumer advisory council to advise on the delivery services provided by the exchange.
Several state legislatures enacted measures related to state immunization registries to assure data is complete and accessible while maintaining security and confidentiality. For example, Texas required immunization providers to include race, ethnicity, age and county when reporting immunizations provided during a public health disaster for related communicable diseases. New York provided schools with improved access to the statewide immunization database.
Some states identified additional ways that hospital discharge data can be used for public health decisions. Alabama passed legislation that requires the public health department to collect hospital discharge data and compile and analyze the data for the Alabama Hospital Association. The bill also establishes an advisory council to develop rules to implement the act and consult with the department on collection, protection and dissemination of discharge data. Connecticut now requires hospitals to provide the public health department with access, including remote access, to patient medical records that concern a reportable disease, while keeping all data confidential.
States have also enacted legislation to assure efficient and effective sharing of laboratory data. Texas requires the department of health to collaborate with laboratories and hospitals to plan, design and implement a standardized and streamlined method for sharing information during a public health disaster or communicable disease outbreak. Kentucky prohibits information blocking, except in certain cases, and requires the reporting of medical laboratory data to electronic health information exchanges or networks for the purpose of meeting the requirements of the 21st Century Cares Act.
The legislation noted above represents just some of the strategies used by states to improve public health data systems for better decision-making. NCSL’s State Public Health Legislation Database includes over 115 bills related to public health information and reporting as well as other topics such as infectious diseases, vaccines and the public health workforce.
Shannon Kolman is a policy specialist in NCSL’s Health Program.