Shifting from paper-based to electronic death registration systems
Is it time for a bold new strategy for developing and maintaining electronic mortality data systems? Since 1900 when the Census Bureau first created death registration areas in the United States, the collection and registration of deaths have been a paper-based process. In the 1990s, the collection and registration process began to shift with the piloting of a technology-driven process in New Hampshire. By the early 2000s, other jurisdictions began to see the value of an electronic process, ushering in a new era of mortality data systems.
In the last 15 years, this shift from a paper-based to an electronic death registration (EDR) system has been uneven across the 57 vital registration jurisdictions. Some jurisdictions were able to establish effective statewide EDR systems, characterized by timely transmission of mortality records to NCHS, statewide coverage, adequate technical support, and active participation of funeral homes and the medical and coroner communities. Some jurisdictions established EDR systems that barely operated beyond the paper process, or that simply mimic that process. Other jurisdictions failed to establish a computerized system at all. Compounding this unevenness, some jurisdictions struggled with the development and maintenance costs of these systems, hindering the opportunity for establishing an effective system. The dominant mode of thinking in this era was that each jurisdiction had to build their own system because of their perceived “uniqueness,” exploding the nationwide costs for these systems.
We are now approaching the time that these initial computerized EDR systems are reaching their life expectancies and must be significantly upgraded or totally replaced. As we address this new challenge, a strategic question confronts us: must each jurisdiction build its own “unique” system as done in the previous era, or is it time for us to take a different—maybe even bold—approach? In this context, I submit to you that it is time for a new era in mortality systems development.
EDR systems of the future must emphasize cross-jurisdiction collaboration to address truly unique business rules and needs and the use of emerging and adaptable technologies. They must be scalable, standards-based and interoperable with other systems, such as electronic medical records and medical examiner/coroner systems, and be able to be used for pandemic events. Equally, for every dollar invested in them, there must be maximum value obtained through the minimization of unnecessary duplication—and thus costs—across states.
Launching the Next Generation Electronic System
To address these challenges, NCHS is making a strategic investment to ensure that all 57 jurisdictions have access to an enhanced and sustainable EDR system. This effort will provide secure mechanisms to gather and store mortality data electronically, send standard data elements to a diverse group of stakeholders in multiple formats in near real-time, and return coded cause-of-death data from NCHS back to the jurisdictions in an automated, timely fashion. It will also provide a set of tools that jurisdictions may use to improve their ability to collect, process and/or disseminate timely, high quality death information.
We are launching a new initiative with the MITRE Corporation through the Department of Health and Human Services’ Federally Funded Research and Development Center. This initiative will involve our key partners—the 57 registration jurisdictions, the National Association for Public Health Statistics an Information Systems, Social Security Administration and others—to develop the Next Generation Electronic Death Registration System for optional use by states. It also entails: 1) the development of tools such as micro services, standards, technical specifications, and applications that bolster our nationwide capacity to detect, prevent, and contain evolving health; and 2) the examination of new and innovative approaches to sustain the enhanced infrastructure over time.
We will incorporate the latest thinking about the flow of data and information and the interoperability between electronic health records, medical examiner/coroner systems, and an EDRS. Decision support tools or strategies will be incorporated that may aid physicians in completing the cause of death information, as well as the use of mobile technology to enable physicians to certify the cause of death easily, whether that’s from a hospital, hospice care or home. We anticipate that many issues will come from these discussions that will become opportunities to improve federal/state/vendor partnerships and collaborations.
Governance of the Next Generation System
But more important than even the technology, creating a collaborative EDR system requires the establishment of a thoughtful, realistic governance structure that guides the development and operations of the Next Generation System. This structure must ensure that the decision-making authority is effectively shared among the users of the system, with NCHS being the catalyst rather than owner.
Electronic Death Registration System in all jurisdictions
This new era of developing and maintaining an EDR will require everyone—from NCHS to registration jurisdictions to vendors—to think differently about building, managing and/or sustaining these systems going forward. While using the Next Generation System is optional, we believe this collaborative approach will serve as an example to all jurisdictions. It can potentially change the way vendors do business, making the maintenance and updating of the systems easier for jurisdictions in the long run. It can change the quality of the EDRs currently operating, enabling them to better meet the characteristics of an effective EDR. More importantly, it can ensure that all jurisdictions have an opportunity for an effective EDR system within the next three years. The Next Generation initiative ushers in a new strategy for mortality systems—bold but necessary.
- Timely transmission of mortality records to NCHS
- Statewide coverage
- Adequate technical support
- Active participation of funeral homes and the medical and coroner communities