Modernizing Drug Death Data
Improving the Timeliness and Quality of Drug Mortality Data and the Interoperability of State Electronic Death Registration Systems
Transmission of death information to NCHS within 10 days of date of event for at least 80% of death events
Transmission of at least 90% of drug overdose deaths to NCHS within 90 days of death events
Transmission of death information to state Injury Surveillance Systems within two business days after receipt of the cause of death code from NCHS
Because mortality data can help support public health strategies in so many ways, finding tools and methods to better collect that information and exchange it more easily is a priority, especially when it comes to addressing the latest public health emergency: the opioid crisis.
To help data about drug overdose deaths flow more fluidly from the local to the national level and vice versa, CDC’s National Center for Health Statistics (NCHS) received funding through the Patient Centered Outcomes Research Trust Fundexternal icon for a project designed to improve the quality and timeliness of mortality data.
Connecting people to connect systems
As part of this project, entitled Modernizing the Infrastructure for Capturing Drug Death Data and Enhancing Research on Opioid Poisoning using Death Certificates’ Literal Text Field, an implementer’s community was created to develop, test, pilot, and track the progress of new and more interoperable approaches to sharing important mortality data.
This implementer’s community brings together medical examiners and coroners who certify drug overdose deaths, personnel from state vital records offices that register the deaths, CDC staff who produce official national statistics, IT experts, mortality data users, health information and technology experts, and federal, state, local, and tribal stakeholders. Representatives from six states—California, Florida, Georgia, Michigan, New Hampshire, and New York—are part of the collaborative team.
The goal is for the implementers’ community members to learn from each other, test new approaches to interoperability, and demonstrate how standards-based technologies and techniques can be reused across the country to help our collective investments go further. The project will identify and coalesce information from toxicology lab systems, electronic medical records systems, prescription drug monitoring programs, and other data systems that medical examiners and coroners rely on every day to help them to determine and report cause of death.
Sharing the vision through collaboration
To help forward this goal across our nation, NCHS recently funded 10 additional states to examine the business practices and technology associated with the collection and exchange of drug-involved mortality information in their states.
These 10 states are working toward improving the timeliness and quality of drug mortality data and the interoperability of state electronic death registration systems: Washington DC, Iowa, Indiana, Kansas, Louisiana, Maryland, Mississippi, Nevada, New Mexico, and Utah. The plan is for the results produced in the first year by the six Implementer’s states to 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. Faster, better data exchange will allow us to improve and expand how we use mortality data to monitor health and save lives.
September 16-17: Members of the Implementers’ Community gathered at the Georgia Tech Research Institute (GTRI) in Atlanta for an open exchange of ideas, challenges, and successes. Live demonstrations showed “proof of concept” for ideas generated in previous meetings, while conversation focused around several main themes:
- Connection: Engaging medical examiners and coroners to improve data capture and link case management systems to vital records and state surveillance systems
- Timeliness: Applying FHIR standards to move data faster for real-time surveillance
- Quality: Correcting errors and duplication while maximizing our ability to share and analyze death information
The in-person meeting also offered jurisdictions at various stages of the work a unique opportunity to connect with one another. “Jurisdiction to jurisdiction learning is essential in this process,” says Kate Brett, who led the meeting on behalf of the Division of Vital Statistics (DVS).
DVS Director Steven Schwartz commended the community, saying, “Through your good work, we are on the cusp of some great opportunities.” Deputy Director Paul Sutton noted that NCHS is also focused on improving its internal processes.
Other highlights included:
- NCHS announced its decision to focus developmental efforts on HL7 FHIR standards to exchange information between electronic death registration systems (EDRS) and NCHS.
- On-site developers demonstrated use of FHIR standards to connect electronic data in real-time between multiple systems: from ME/C case management systems to state vital records systems, from states to NCHS, from states to the cancer registry, and from state to state.
- Participants demonstrated cutting-edge tools, including an interactive dashboard that allows instant visual analysis of medical examiner data, and technology for natural language processing of literal text from death certificates.
In concert with the meeting, many of the attending states also participated in the public health track of a two-day “HL7 FHIR Connectathon” to test the recently balloted Vital Records Death Reporting Implementation Guide.
February 4– 7: The third in-person meeting of the Implementers’ Community brought together participants from states, the National Vital Statistics System at NCHS, other CDC programs, data and IT partners, NAPHSIS, and other interested stakeholders to identify challenges, share project successes, and exchange ideas for the future.
In an opening address, Dr. Chesley Richards, CDC Deputy Director for Public Health Science and Surveillance, commended the group. “This community is a shining example of how public health work can and should be done,” he said, “collaboratively, consistently, actively, and with an eye toward the future.”
Highlights from the meeting:
- The six Implementers’ Community states – CA, FL, GA, MI, NH, and NY – presented their progress in achieving project plan goals, including connecting with medical examiners and coroners, toxicologists, state and local public health partners, NCHS, and CDC experts in cancer and violent death reporting to help design and test FHIR standards to support the automated exchange of mortality data.
- The meeting also included participants from additional states funded by NCHS who are working to increase the timeliness and accuracy of death reporting. While these states are not obligated to implement APIs to conduct data exchange, the meeting encouraged further collaboration among those attending.
- A four-day, hands-on “developer’s track” provided a unique opportunity for members of the community, public health subject matter experts, IT system developers, and R&D partners to collaborate toward innovative technical solutions in real time.
September 11: The workgroup held an in-person meeting in Atlanta, Georgia. This gathering brought together workgroup members, guest speakers, and representatives from a collection of CDC offices and centers to exchange knowledge and share updates on the project’s ongoing work.
Important highlights of this meeting include:
- Charles Jaffe, Chief Executive Officer of HL7, spoke to the group about HL7, FHIR, and the FHIR community
- Abdul Malik Shakir, President and Chief Informatics Scientist from Hi3 Solutions, discussed the eVitals standards development initiative, FHIR, and the HL7 balloting process for standards development
- Representatives from individual states (California, Florida, Georgia, Michigan, New Hampshire, and New York) shared plans and goals for modernizing death reporting over the course of the project.
- Representatives from six CDC programs and centers shared short presentations on how mortality data from death certificates is used in their focus area. These included:
- Cancer (Division of Cancer Prevention and Control
- Environmental health (National Center for Environmental Health, Disaster Epidemiology
- Opioids reporting (National Center for Injury Prevention and Control, Opioid Overdose
- Public health preparedness and response (Office of Public Health Preparedness and Response, State and Local Readiness
- Sexually transmitted diseases (National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention, Division of HIV/AIDS Prevention
- Violent death reporting (National Center for Injury Prevention and Control, National Violent Death Reporting System
- Programmers and developers collaborated on the developers track to continue to identify priorities and make progress
- Representatives demonstrated Florida’s ESSENCE platform and shared examples of how mortality data are used in Florida to Support Syndromic Surveillance
- At the HL7 FHIR Applications Roundtableexternal icon meeting in Washington, DC, Steven Wurtz, registrar from the state of New Hampshire, and Paula Braun, a representative from CDC’s National Center for Health Statistics (NCHS), received a best-in-show recognition for their presentation on the project’s collaborative work to improve the timeliness and quality of death data. Watch a video of the presentation here.
- NCHS is joining with partners to update the National Association of Medical Examiners (NAME)external icon consensus position paper on drug overdose death investigation, diagnosis, and certification, and to develop training for drug overdose death investigation based on the updated position paper.
- CDC’s National Center for Health Statistics funded 10 additional states to examine the business practices and technology associated with the collection and exchange of drug-involved mortality information in their states. These 10 new interoperability states are: Washington DC, Iowa, Indiana, Kansas, Louisiana, Maryland, Mississippi, Nevada, New Mexico, and Utah.
June 6: IT experts from the Implementer’s Workgroup demonstrated tools they developed under the scope of this project at the National Association for Public Health Statistics and Information Systems (NAPSIS)external icon annual meeting.
June 19-21: A subset of the IT experts attended the HL7 FHIR DevDaysexternal icon event to collaborate with the FHIRexternal icon community and learn ways to simplify how mortality data are collected and exchanged in their states.
June 22: In response to the developing interest in this work from leadership of forensic toxicology and forensic pathology organizations, the Division of Vital Statistics held a one-day listening session at the National Center for Health Statistics headquarters in Hyattsville, MD. This helped attendees get a better understanding of what can be done to improve the timeliness and accuracy of data on drug related deaths from the perspectives of data providers (i.e., forensic toxicologists and forensic pathologists) as well as data requestors (i.e., epidemiologists, public health and public safety stakeholders). Representatives from the American Society of Crime Lab Directorsexternal icon, Society of Forensic Toxicologistsexternal icon, National Association of Medical Examinersexternal icon, and Association of Public Health Laboratoriesexternal icon attended. Representatives from multiple government agencies also took part, including the Department of Justice, (e.g., Drug Enforcement Administration), Department of Transportation (e.g., National Highway Traffic Safety Administration), and the Department of Homeland Security (e.g., Customs and Border Protection). In addition, participants came from state and local crime labs, state and local medical examiner’s offices, a High-Intensity Drug Trafficking Area, and from other critical partners, such as the Forensic Science Center of Excellence and a national toxicology lab. CDC attendees included representatives from NCHS, the National Center for Injury Prevention and Control, and the National Center for Environmental Health’s Lab Response Network.
May 2-4: The workgroup held its first in-person kick off meeting in Atlanta, Georgia. The meeting brought together, for the first time, multispecialty expertise and perspectives along the entire continuum of mortality reporting.
Designed to be interactive, the sessions held during this meeting helped participants think collectively about issues around data standards, interoperability, privacy, and related policies and practices. Over the course of the meeting, participants:
- Mapped out the flow of data from the death scene to when the data reaches the National Vital Statistics System (NVSS) at the national level and identified inefficiencies and potential enhancements
- Learned about existing tools and projects in the field of data interoperability
- Explored ideal future states for the flow of mortality data
- Committed to measure and evaluate progress toward the 90% within 90 days goal
“This work is critically important. Think about how increasing the timeliness of data will impact what we are able to do with mortality data, from public health programs to drug enforcement to making critical programmatic policy decisions. Delivering these vital statistics in a more efficient way can play a crucial role in making that information count where it’s needed most.”
– Delton Atkinson, former director, CDC Division of Vital Statistics, National Center for Health Statistics
“I was so pleased to participate in the Implementer’s Community to discuss how technology can be used to support timelier mortality data. What we discussed has the potential to inform several CDC data collections, including SUDORS, and uses information from forensic toxicology tests and medical examiner and coroner reports to inform prevention and response efforts. It was exciting to hear and see how committed everyone is to using data and cutting-edge IT developments to inform our response to the opioid overdose epidemic.”
– Christine Mattson, health scientist overseeing activities for the State Unintentional Drug Overdose Reporting System (SUDORS), CDC Division of Unintentional Injury Prevention, National Center for Injury Prevention and Control
“We remain committed to this great work. The nation’s forensic science laboratories and medical examiner/coroner offices generate the vast majority of the data that federal agencies need to be able to make educated policy and funding decisions. The better coordinated we are with our federal partners, such as CDC, the easier it is for our members to provide this data and get back helpful information from epidemiologists, researchers, and statisticians to shape our state and local operations, policies, and statutes.
“We have learned through the opioid crisis how dependent federal law makers and policymakers are on the data being generated in state and local labs and medical examiner/coroner offices. We have also learned how critical data sharing is in making and enforcing law, death investigation, interdiction, and treatment strategies. Forensic science service providers are a critical component in this process and are extremely grateful to the CDC for their interest in improving these data systems. We look forward to even more collaboration on this initiative.”
– Matthew Gamette, President, American Society of Crime Lab Directors
“Our intent is to reduce or eliminate the interoperability challenges found today within our data collection systems by identifying a scalable, standards-based mortality collection system through a range of technologies to better manage the complexity of mortality data, resulting in an enhanced mortality reporting ecosystem. End result: bolstering our nationwide capacity to detect, prevent, and contain emerging health threats.”
– Stephen Wurtz, State Registrar and Director, New Hampshire Department of State, Division of Vital Records Administration