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Compendium of Policies on Use of Linkable Mortality Data for PCOR in the Nation's 57Mortality-Reporting Jurisdictions

Compendium of Policies on Use of Linkable Mortality Data for PCOR in the Nation’s 57 Mortality-Reporting Jurisdictions
Agency
  • Office of the Assistant Secretary for Planning and Evaluation (ASPE)/Office of Behavioral Health, Disability, and Aging
  • National Institutes of Health (NIH)/National Institute of Mental Health (NIMH)
Start Date
  • 01/15/23
OS-PCORTF Strategic Plan Alignment

  • Primary: Goal 2: Data Standards and Linkages for Longitudinal Research

     

 

STATUS: Completed Project

BACKGROUND
Survival is a fundamental person-centered outcome and access to mortality data is essential for research to improve health and wellbeing. However, accessing mortality data in the U.S. is challenging, as these data are owned by 57 jurisdictions, each with their own policies on accessing and using the data for patient-centered outcomes research (PCOR). Further, the 57 jurisdictions’ policies collectively determine policies for using the two national systems for linkable mortality data: the National Center for Health Statistics’ National Death Index (NDI) and the Social Security Administration’s full Death Master File (DMF). PCOR investigators often struggle to determine how or even whether mortality data are available for their studies and may spend considerable time and resources in the process. 

This project conducted an inventory of the formal policies on the use of linkable mortality data for PCOR for each of the 57 mortality-reporting jurisdictions, publishing the results in a public report and database. These products make it more efficient and less costly for PCOR investigators to determine the best ways to obtain data on survival and mortality. Further, this project informs ongoing efforts to improve the usability of national systems for linkable mortality data for research

PURPOSE 
This project aimed to improve researchers’ ability to access linkable mortality data by:   

  • Conducting a systematic inventory of formal policies on the use of linkable mortality data for PCOR for each of the 57 mortality-reporting jurisdictions.   
  • Producing a public report and database that document each jurisdiction’s requirements, along with relevant logistical information (e.g., point of contact, application process, fee schedule). 

KEY IMPACTS 
Improving access and use of data: Compendium of mortality data policies 
The compendium of mortality data policies developed by this project makes it easier and less expensive for PCOR investigators to determine the best ways to obtain data on survival and mortality for their studies, thus increasing the potential use of this data for PCOR.

Enhancing analytic resources: Key policy features to support data access 
The project team identified essential and preferred policy features for mortality data for researchers as well as examples of jurisdictions with ideal data access policies for PCOR. These findings could inform improvements in data access policies in other jurisdictions and be used to improve the usability of national systems for linkable mortality data for research.

PUBLICATIONS 
Electronic Compendium of Mortality Data Policies. This interactive dashboard describes mortality data policies in all 57 mortality-reporting jurisdictions, along with relevant logistical information (e.g., points of contact, application process, fees).

Project Final Report. This report summarizes findings from the review of mortality data policies, including key features of mortality data policies for research (e.g., data scope, application processes, permitted uses, data protection requirements), implications for researchers, and essential and preferred policy features for mortality data access for research.