Modernizing Drug Death Data Project Updates

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.