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Modernizing the Flow of Death Data is Lifesaving Work

Transforming our systems for today

Timely, accurate mortality data are at the center of effective public health decision-making. However, tracking and reporting mortality data for an entire nation is a complex and decentralized process, with information flowing through a multitude of systems at the local level up to the national level, and often back down again.

Historically, the electronic systems used to share mortality data have not been designed to exchange information with one another. The lack of connectivity places a large burden on individual data providers (staff in medical examiner and coroner offices, vital records offices, post-mortem toxicology offices, etc.) who must respond to many different requests and requestors.

This is prompting public health to explore new ways to improve the flow of health information. The goal is to adopt best practices for electronic information exchange that put less burden on and deliver more value to data providers, while delivering more “real-time” and automated data feeds to those requesting the data.

Today, CDC’s National Center for Health Statistics (NCHS) and its partners are working on a project that will make mortality data more timely, usable and accessible to the many experts who depend on it to fulfill their missions.

Health Statistics Start Here

When decision-makers at the top levels of government and across public health need information they can trust, they consult the official statistics created by a set of 13 organizations that make up the U.S. Federal Statistics System.

As the principal health statistics agency in this group, the National Center for Health Statistics (NCHS) is responsible for collecting and disseminating the official health statistics for the country, including the nation’s vital statistics.

These statistics provide, among other things, the most complete and continuous data on what people are dying from across the United States, including deaths from drug overdoses.

Connection leads to understanding

Mortality Flow Data

These yarn paths illustrate the flow of mortality data to different programs throughout CDC.

The project brings together a community of key players who work with, create, and process mortality data from death certificates. This “implementer’s community” includes leaders from centers across CDC, top experts in information technology, and representatives from six U.S. states who are leading the way in adopting new technologies under the project.

NCHS has also funded 10 other states to examine the business practices and technology associated with the collection and exchange of drug-involved mortality information in their states. The plan is for the results produced in the first year by the Implementer’s states to also be piloted in of some of the 10 states over the second year of the project. The national goal is to promote a standards-based approach that will improve the electronic exchange of mortality information, both within states and between states and NCHS.

On September 11, 2018, the project’s implementer’s community held its second in-person meeting in Atlanta, Georgia, to discover more about how mortality data flow and are used at multiple points across the public health spectrum.

Insights on interoperability

Because state and local experts play a key role in creating and processing death data, an important part of the meeting was hearing from the state representatives in attendance, who presented their plans and priorities for strengthening death reporting. “My job is to serve my community,” said Stephen Wurtz of New Hampshire. “And what better way to serve that community than by making sure they’re getting real-world data fast?”

One way to provide data faster without sacrificing its quality is to make systems more interoperable. Interoperability is about enabling information – like mortality data – to move easily from one space or system to another. Two top-level experts in the health information industry helped the group consider ways that that both states and CDC could increase interoperability.

Dr. Charles Jaffe

Dr. Charles Jaffe, CEO of HL7, spoke about FHIR at the workgroup meeting in September.

Keynote speaker Dr. Charles Jaffe, Chief Executive Officer of HL7, told the group that reusable technology has the power to transform the way health information is shared at all levels. Best of all, he explained, we don’t have to reinvent the wheel. Technologies like HL7’s FHIR standardexternal icon are being adopted across many government agencies to set standards and modernize systems so they can “speak the same language.” Widespread adoption of solutions like this can help move death data – including information about drug overdose deaths – more fluidly among the people who rely on it.

Abdul Malik Shakir, President and Chief Informatics Scientist from Hi3 Solutions, provided an overview of the eVitals Initiative, which consists of an array of standards for exchanging vital records data. “All the work we are doing is a natural evolution of the same problem,” said Shakir. “We have data we need to exchange, so how do we best accomplish that?”

Visualizing how data flows

The group also heard from representatives from six CDC programs, who gave short presentations on how data from death certificates are used in their focus area. This created a better understanding of the many ways mortality data are critical to CDC’s mission.

A unique, hands-on exercise provided a powerful visual about how mortality data flows to and from CDC, and how it affects the workload of state and local public health staff. Using brightly colored yarn, the representatives from the CDC centers mapped out how mortality data moves through the various “hubs” and “pipelines” from local to state to national levels.

Once all the strings of yarn were in place, the group was able to see how data from death certificates travels to their specific offices, and where the opportunities and burdens exist within that path. Although the map represented only a small portion of the programs at CDC that rely on this data, one thing was clear: many of the strings touched local coroners’ and medical examiners’ offices, and reducing the workload and making data flow more seamlessly at that point could help.

Moving forward together

Delton Atkinson (l) and Dr. Steve Schwartz

Delton Atkinson (left) and Dr. Steve Schwartz of the National Center for Health Statistics

By the meeting’s close, CDC programs better understood how their data requests impact vital records and medical examiners’ and coroners’ offices, and the community as a whole better understood how the data are used. Participants also saw how work at the state and local levels relates to the national picture of health in America, and how deeply valuable vital statistics are to decision-makers at every level of public health. As Delton Atkinson of NCHS noted, “At this point in time, there are more conversations about vital statistics going on than ever before. We’ve raised the awareness of vitals in health and public health.”

Dr. Steven Schwartz, Director of the Division of Vital Statistics at NCHS, spoke to the need for more partners to get involved in the project. “This is a great opportunity. There is a lot of energy going forward,” he said. “We need to get more states excited about this.”

The progress we make now could translate to thousands of lives saved each year. It can also equip us to be even more capable of handling not only the opioid overdose crisis, but also the next health crisis that will inevitably come.

The project community will meet over the next two years to continue their progress. For more information about this project or mortality data interoperability, please visit the project’s webpage or read the story Drugs, Death and Data.