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 Fund 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.
May: This month’s Implementer’s Community meeting focused on the COVID-19 pandemic placing more demand on our nation’s death reporting systems, our focus remains on improving the timeliness and quality of mortality data to help curb the crisis.
Rhonda Smith, a Health Informatics Specialist from the DC Vital Records Office, shared details this month on Washington DC’s major efforts to modernize death reporting and – critically – to create meaningful connections between stakeholders. Smith advised the group: “We started planning early and built a solid foundation. What we’ve learned so far is that communication is key. Social capital is tremendous – start small and build it up. Make sure your leadership is engaged and invested. Most of all, stay engaged for support and collaborative problem solving – through the Implementer’s Community, with MITRE, GTRI, NAPHSIS, NCHS, and by participating in connectathons.”
A new blog post, Interoperability Begins with People, explains how Washington DC moved from being “alone on an innovation island” to building strong relationships across their jurisdiction that are proving vital today.
Also discussed at this month’s meeting:
- The May 11 technical call covered issues around unique identifiers in the various systems that are part of the mortality data flow including EDRS, EHRs, funeral homes and ME/C CMS. The community discussed key use cases and brought forward suggestions on how to identify death records coming from different systems and track them more efficiently in the EDRS and elsewhere. This is a topic that needs further discussion.
- This year’s “in-person” Implementers’ Community meeting will be held virtually from September 21-22. More information will be forthcoming.
- Communication efforts are expanding and include web resources and new blogs and stories on community members’ experiences and successes.
- All jurisdictions are encouraged to formally present their work to the group at future meetings. Utah will present in June, followed by New Mexico in July and New York in August
April: This month, Implementers’ Community members received a detailed update from the Georgia Tech Research institute (GTRI) on the in-progress Case Management System (CMS) Reference Implementation. GTRI is working closely with users and applying technical expertise to build a mortality reporting platform. The goal is to better connect Medical Examiners’ and Coroners’ systems to Electronic Death Registration Systems (EDRS). This open source tool will use FHIR to map relevant data elements from the CMS to the EDRS, allowing death information to flow quickly and seamlessly between ME/Cs and state and national vital registration systems.
This month’s meeting also highlighted the need to share stories about challenges and successes across the Implementers’ Community. Stories are an important tool to forward data modernization work through connecting knowledge, ideas, and innovative solutions being developed and implemented across the community. Stories will be featured on the CDC website at: Surveillance and Data — Blogs and Stories.
COVID-19 has elevated the importance of streamlining processes for death reporting. States gave updates on their progress, including adding new surveillance questions to their electronic systems and addressing the growing needs of physicians to report deaths electronically. States continue to connect with medical examiners and coroners around improvements to case management systems, both related to the pandemic and to other ongoing work.
Also at this meeting:
- NCHS announced that they are exploring ways to share documents and tools within the community and asked for jurisdictions’ help in testing proposed solutions.
- MITRE shared important information about updates to the .net library and the Canary testing framework, specifically updates supporting the latest version of FHIR. They asked the community for feedback before wider use of the tool begins.
- NCHS is working with MITRE to test tools for asynchronous messaging between NCHS and the Nightingale EDRS prototype. More will be shared with jurisdictions after this initial testing phase is completed.
March 18: The Implementers’ Community met to discuss multiple points of progress around HL7 FHIR standards. For example:
- NCHS is calling for states to test the published Vital Records Death Reporting FHIR Implementation Guide (VRDR FHIR IG). NCHS requested subject matter expertise in reviewing the IG, as well as hands-on testing at the September Connectathon.
- NCHS is seeking a total of (6) state vital records representatives (2 representatives from 3 states) to participate as subject matter experts in a new workgroup to guide the development of a Health Level Seven International (HL7) FHIR Implementation Guide (IG) for Birth and Fetal Death Reporting (BFDR).
- MITRE gave a presentation on next steps in FHIR-based interoperability, including how FHIR messaging will handle updating prior submissions, voiding prior submissions, acknowledgement messages for delivery status, and error response.
- As jurisdictions are working to develop SMART on FHIR apps, it is critical to monitor the impact of using these apps on data quality, particularly for cause of death reporting. The financial implications when working with COT electronic health records should be considered, since there may be costs associated with hosting SMART on FHIR apps.
- GTRI is continuing work to help CMS vendors and users through mapping CMS elements to FHIR VRDR. They are seeking Medical Examiner/Coroners’ offices to help with the development and testing process.
NCHS is developing a centralized repository of resources related to FHIR messaging and death reporting. Meanwhile, resources can be found at Modernizing Death Reporting and Modernizing the National Vital Statistics System.
February 19: This month’s Implementer’s Community meeting focused on making connections, with an in-depth discussion of results and activities from the Connectathon held during the week of January 20-25. Other highlights included:
- NCHS encouraged all to attend the HL7 Connectathon in September 2020 to test interoperability between EDRS and NCHS, as well as between CMS and EDRS.
- Florida updated the group on efforts to connect toxicology labs to CMS and EDRS using FHIR.
- New Hampshire noted that they are working toward new/better electronic systems for their medical examiners’ offices.
- GTRI presented their progress on the development of the CMS reference implementation. They are working on mapping CMS data to FHIR for easier, faster, and more accurate information exchange.
- MITRE and GTRI offered any technical assistance needed to the community, including reviewing sample FHIR documents or helping with FHIR mapping.
- HL7’s Abdul-Malik Shakir updated the community on upcoming changes to FHIR but noted that these should not affect implementation.
Meeting Summary: IHE Connectathon, January 20-25:
Experts from the National Center for Health Statistics (NCHS), Georgia Tech Research institute (GTRI), MITRE, electronic records system vendors, and Implementers’ Community states were all in attendance at the IHE Connectathon in Cleveland, Ohio. Their objective was to check the ability of various vital records systems to send and receive records seamlessly using FHIR standards.
The unique environment and structure of the Connectathon allows participants to identify and solve interoperability issues in real time. During the weeklong meeting, five Implementer’s Community states worked alongside their technology partners to deploy a series of “test cases”:
- Delaware and Genesis tested birth data between their electronic health records (EHRs) and electronic birth registration system (EBRS); sent five test cases to NCHS to receive a coded cause of death; sent cancer death records to both the California and CDC cancer registries; and tested the flow of birth and fetal death records from Epic using the Genesis Interoperability Module (GIM).
- New York State and VitalChek tested sending cancer death records to NCHS to receive a coded cause of death; sent a cancer record to both the California and CDC cancer registries; ran a “car accident” test case; tested the upstream flow of EHRs from Epic for births and deaths; and tested the interoperability of inter-jurisdictional death records between VitalChek and Genesis.
- Michigan and Altarum tested sending various cases to NCHS, including test cases for deaths related to pregnancy, car accident, cancer, and opioids.
- New Hampshire and CNSI focused on interoperability between their electronic death registration system (EDRS) and NCHS. CSNI worked closely with GTRI and MITRE to update their EDRS to be compliant with Vital Records Death Reporting (VRDR) FHIR development and validate messages in Canary. (The use of Canary is integrated into the Connectathon testing process to aid developers in implementing the VRDR FHIR death record format.)
- California Cancer Surveillance System: With their vendor present, CA worked with NY, MI, DE and NH to receive a full FHIR message and coded cause of death to their API for testing. The API for the California Cancer Surveillance System was shared with testing partners using Zulip.
The meeting also offered a forum to discuss innovation and future plans. For example, attendees saw a demo of the Genesis Interoperability Module (GIM), which is to be used for interoperability between EDRS, EBRS and EHRs. Using SMART on FHIR, the GIM Pulls data from EHR into a death certificate. It allows the physician/medical examiner/coroner to review data including medical observations, lab results, etc., and use the data to certify the cause of death.
GTRI shared plans for developing a reference implementation of CMS for cause-of-death certification using SMART on FHIR. Thus far, GTRI has mapped U.S. death certificate fields to the fields in the VertiQ CMS used in Alabama to determine their level of concurrence.
VitalChek will be working on EHR to EDRS interoperability using FHIR in the near future, and Altarum is looking at CMS and EDRS interoperability.
Also featured at the Connectathon were multiple walk-throughs testing cases for birth and death data interoperability involving multiple partners and vendors. These scenarios were in support of what would be demonstrated at HIMSS during the Interoperability Showcase presentations.
January 15: The Implementers’ Community met to discuss bottlenecks and solutions for how to work with toxicology labs to speed drug toxicity results. Discussion points included:
- The use of public vs. commercial laboratories varies widely between and within states. While commercial labs can often provide results faster, the costs of using them may be higher.
- Increased needs for drug testing mean that toxicology labs often experience backlogs and are overloaded with requests, which can create lags.
- Some toxicology labs lack the necessary equipment to process results quickly or effectively.
- Different data formats used by toxicology labs can present problems with sharing the results back to medical examiners and coroners’ offices.
- The need to use multiple systems slows down data.
- Negative results tend to come back more quickly than positives, which take longer.
- Surveys can helpful in discovering the specific issues labs face in terms of workload, electronic systems and processing times.
Several states have taken advantage of funding opportunities to improve toxicology labs, get student assistance to conduct surveys, implement new Case Management Systems, purchase needed equipment, and offer reimbursement to medical examiners’ offices that use their own labs.
December 11: The Implementers’ Community continues to grow, bringing in new jurisdictions who are working to streamline the flow of data between medical examiners and coroners’ offices, state vital records offices, state surveillance systems, and NCHS.
At the December meeting, implementing states gave updates on their ongoing work, including:
- Improving the timeliness of death records transmitted to NCHS
- Increasing the frequency of updates to cancer registries
- Helping medical examiners and coroners’ offices implement and improve the interoperability of their case management systems
- Addressing challenges faced in receiving information from toxicology labs
- Improving reporting of opioid deaths and other notifiable diseases
Highlighting a milestone, New York state reported that their death registration systems are now over 80% fully electronic and they are starting to assist other jurisdictions with implementation.
NCHS noted that it will be testing its updated Vital Records Implementation Guide at the January IHE Connectathon, while experts from GTRI and MITRE were also on hand to discuss technical issues and give updates on interoperability standards and testing tools to help states with implementation.
November 13: The Implementers’ Community met with NCHS to continue collaboration toward the project’s goals. NCHS noted that these meetings are critical to maintain momentum toward improving drug death data.
Six implementing states – CA, FL, GA, MI, NH, and NY – shared recent successes, challenges, and strategies. As states shared their updates, a theme emerged around building stronger connections with medical examiners and coroners offices – not just electronically, but also interpersonally. For example:
- California held a unique series of listening sessions with medical examiners and coroners that helped identify barriers to timely reporting, including specific challenges around workload and staffing.
- Florida set up a workgroup that connects medical examiners, state experts, and the University of Florida’s toxicology lab to determine how they can automate toxicology results.
- Georgia is increasing timeliness of death reporting as they move toward fully electronic death registration systems by looking at how medical examiners and coroners can submit information without unnecessary burdens.
- Michigan is improving information exchange between medical examiners’ case management systems and electronic death registration systems, including automating transmission between these systems and making validation easier.
- New Hampshire is working toward new case management systems for medical examiners that can interface better with electronic death registration systems.
- New York announced the release of its new opioid-related cause of death tutorial, Mastering Cause of Death in the 21st Century, which aims to increase the knowledge of proper death certification by medical examiners, coroners, and other medical certifiers while improving specific-drug information.
The discussion also included experts from Georgia Tech Research Institute (GTRI) and MITRE, who are helping the group create boots-on-the-ground solutions to technical challenges around standards and interoperability. GTRI and MITRE continue to support all the implementing states by finding innovative and efficient ways to automate data exchange using FHIR standards and APIs.
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 Roundtable 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) 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) annual meeting.
June 19-21: A subset of the IT experts attended the HL7 FHIR DevDays event to collaborate with the FHIR 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 Directors, Society of Forensic Toxicologists, National Association of Medical Examiners, and Association of Public Health Laboratories 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