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

Improving existing data infrastructure to support more timely and complete mortality data collection.
Background
Purpose & Goals
Achievements & Highlights
Resources
Related Projects
Agency
  • Centers for Disease Control and Prevention (CDC)
Start Date
  • 4/3/2015
Functionality
  • Standardized Collection of Standardized Clinical Data
  • Linking of Clinical and Other Data for Research

 

 

 

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 Centers for Disease Control’s (CDC’s) National Center for Health Statistics (NCHS) is working to improve the infrastructure to support more timely and complete mortality data collection through more timely delivery of state death records (e.g., cause of death) to the NDI database and through linking of NDI records with nationally collected hospital datasets to obtain a more complete picture of patient care. The CDC is 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 EDRSs

  • 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

  • HL7 standards and a new implementation guide were drafted, the “HL7 v2.6 Vital Records Death Reporting Implementation Guide.” NCHS and California have successfully exchanged “live” mortality records using the HL7 draft standards. An HL7 Pilot Project debriefing was held among collaborating partners on July 17, 2017. The forum was intended to share experiences, lesson learned and reflect on project outcomes that will inform future HL7 projects. Overall consensus by pilot partners confirmed the pilot successfully demonstrated HL7 format as an effective modality for mortality reporting.

  • The pilot linkage of the NHCS in‑patient and emergency department data with the NDI was completed successfully. CDC has prepared a report describing the methods and results of the data linkage project.

PUBLICATIONS, PRESENTATIONS, AND OTHER PUBLICALLY AVAILABLE RESOURCES

Resources:

Publications:

RELATED PROJECTS

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

  • Enhancing Data Resources for Research Patterns of Mortality in Patient Centered Outcomes Research:

    • Project 1 (Adding Cause-Specific Mortality to National Center for Health Statistics ‘National Hospital Care Survey by Linking to the National Death Index) -  The purpose of this project is to leverage data from CDC’s NCHS and CMS to create new data infrastructures for PCOR to advance studies on mortality following hospital care by making “cause of death” available. Together these linkages will enable the development of national estimates of cause-specific death rates following emergency department (ED) visits and/or hospital inpatient stays for specific conditions. In addition, this project will provide the first-ever data linkage of EHR data from a nationally representative U.S. sample to the NDI, enable evaluations of EHR and claims data on their quality and complementarity, and create new approaches to optimize linkage by using the personally identifiable information available in claims and EHR data.

    • Project 4 (NDI Workshop and Strategy Paper)- NCHS will work together with FDA, ASPE, CMS, NIH, CDC Centers, states, and others to develop a long-term national strategy on access and use of NDI data particularly to support PCOR. The primary objective of Project 4 is to examine the barriers to the access and use of NDI for PCOR (economics, legal, statutory, technical, operational, policy, etc.). At a minimum, these meetings and workshop will examine and make recommendations for: Altering the economic model used to support NDI; Identifying and minimizing the non-economic barriers to accessing and using NDI; Re-using cause of death data (e.g., sharing the data with other research proposals; multiple use of approved data for other research studies); Improving the efficiency of the administrative aspects of linkages; Improving the timeliness and quality of the NDI data; and Improving the timeliness of the NDI approval process.