Improving the Mortality Data Infrastructure for Patient-Centered Outcomes (PCOR)

STATUS: Completed Project

BACKGROUND

Comprised of all U.S. mortality events since 1979, the National Death Index (NDI) database allows researchers to match entries in the NDI to those participating in longitudinal clinical and epidemiologic studies to determine both fact and cause of death. A significant challenge with the NDI has been the lag between the date of death and the availability of the record for matching purposes.

PROJECT PURPOSE & GOALS

The CDC’s National Center for Health Statistics (NCHS) worked to improve the infrastructure to support more timely and complete mortality data collection through: 1) more timely delivery of state death records (e.g., cause of death) to the NDI database; and 2) linking NDI records with nationally collected hospital datasets to obtain a more complete picture of patient care. The CDC engaged in three inter-related tasks to enhance the national mortality system:

• Strengthen existing state mortality data collection infrastructure by supporting state efforts to enhance and upgrade existing Electronic Death Registration Systems (EDRS) to forge a comprehensive network that support electronic data transfer to the NDI for the more timely delivery of state records.

• Pilot draft national standards for the exchange, including bi-directional exchange, of relevant electronic death data from EHRs to EDRS.

• Pilot the linkage of the National Hospital Care Survey (NHCS) in patient and emergency department data with the NDI to assess the feasibility, validity, and reliability of measuring in patient and post discharge mortality.

PROJECT ACHIEVEMENTS & HIGHLIGHTS

• The project awarded 19 states task orders to improve their transmission of mortality data, including making upgrades to internal systems and processes. The improvements should allow for more timely delivery of state records to the NDI database.

• The project conducted inter-system exchanges of mortality data between EHRs and EDRS in partnership with the California Department of Public Health, using draft national Health Level Seven International (HL7) standards.

• The team linked 2012 NHCS inpatient and ED data with the NDI data to measure within and post-hospital mortality. They also established a process to annually link NHCS inpatient and ED data with the NDI, subsequently linking 2014 NHCS data and 2016 NHCS data in 2016. Linked files were made available in the NCHS’ Research Data Center.

PUBLICATIONS, PRESENTATIONS, AND OTHER PUBLICALLY AVAILABLE RESOURCES

Resources:

• The project team published a final report, available here: https://aspe.hhs.gov/sites/default/files/private/pdf/259016/pcor_2019.pdf.

• The CDC team published a report in 2017 about the exchange of electronic death data from EHRs to EDRS, available here: https://www.cdc.gov/nchs/data/nvss/evital/PCOR_200-20012-50804_July_2017.pdf.

• The team published the “Electronic Death Reporting System Online Reference Manual” as a resource guide for jurisdictions to support development and sustainability of EDRS. The online manual is available here: https://www.cdc.gov/nchs/data/dvs/edrs-online-reference-manual.pdf.

• Two reports on the methods for linking the 2014 and 2016 NHCS data and a data dictionary are available here: https://www.cdc.gov/nchs/data-linkage/nhcs-ndi.htm.

• The HL7 Version 2.6 Implementation Guide: Vital Records Death Reporting, Release 1 - US is available here: http://www.hl7.org/implement/standards/product_brief.cfm?product_id=209.

RELATED PROJECTS

Below is a list of ASPE-funded PCORTF projects that are related to this project

Development of Data Infrastructure for Use of EHRs in Comparative Effectiveness Research (ONC/NLM CDEs) - The ONC and NLM common data elements (CDE) project was developed to standardize the collection and exchange of data, i.e., CDEs. For the electronic Case Report Forms (eCRFS), the project developed the standards for the eCRF structure/template as well as the CDEs that were used with them. These forms were ‘extensible forms’ which means that they were developed in a high-level computer language. This computer language facilitates defining the form as a single, stand-alone object. Taken together, these two ONC/NLM CDE products make evident that the project fits the functionality of Standardized Collection of Standardized Data.

Enhancing Data Resources for Researching Patterns of Mortality in Patient Centered Outcomes Research - Through collaboration between the Centers for Disease Control (CDC), Centers for Medicare and Medicaid (CMS), and Food and Drug Administration (FDA), the overall goal of this project is to increase the availability of information on the cause of death by linking NDI data to other sources. Enabling linkages will allow researchers to develop national estimates of cause-specific death rates following ED visits and/or hospital stays for specific conditions.

Augmenting the National Hospital Care Survey (NHCS) Data through Linkages with Administrative Records: A Project – This CDC project’s purpose is to link the 2016 NHCS with Medicare Fee-for-Service claims data and federal housing assistance program data collected from the U.S. Department of Housing and Urban Development (HUD). The linked data will allow researchers to examine the role of federal social support programs in health outcomes and treatment efficacy for persons with stable housing, while also having the ability to focus on specific subpopulations, including persons with SUDs.