STATUS: Active Project
Survival is a fundamental person-centered outcome, and access to mortality data is essential for research to improve health and well being. However, accessing mortality data in the United States is challenging, as these data are owned by 57 jurisdictions, each with their own policies on accessing and using the data for patient-centered outcome research (PCOR). Further, the 57 jurisdictions’ policies collectively determine policies for using the two national systems for linkable mortality data, CDC/NCHS' National Death Index (NDI) and Social Security’s full Death Master File (DMF), with national access generally based on the most restrictive jurisdiction policy . Due to the variation in policies for data access and use, and differences in how information on these policies and procedures are provided, PCOR investigators often struggle to determine how or even whether such data are available for their studies. Investigators can spend considerable time, resources, and money to determine this – and even forego using such data at all – limiting their ability to assess survival as an outcome.
To facilitate assessing survival and mortality as outcomes in PCOR studies, this project will (1) conduct an inventory of the policies for the use of linkable mortality data for patient-centered outcomes research for each of the 57 mortality-reporting jurisdictions and (2) produce a public report and database documenting each jurisdiction’s requirements. These products will make it more efficient and less costly for PCOR investigators to determine the best ways to obtain data on survival and mortality for their studies. In addition, by documenting where particular elements of NDI and DMF policies reflect the (more restrictive) laws, regulations, or requirements of specific jurisdictions (and opportunities to address challenges), this project will inform ongoing efforts to improve the usability of national systems for linkable mortality data for patient-centered outcomes research and related purposes in the public interest.
PROJECT PURPOSE & GOALS
This project will conduct a systematic inventory of the formal policies on use of linkable mortality data for patient-centered outcomes research for each of the 57 mortality-reporting jurisdictions and produce a public report and database that documents each jurisdiction’s requirements, along with relevant logistical information (e.g., point of contact, application process, fee schedule). The resulting report and database will consist of two major components:
- Synthesized and organized information describing key areas where jurisdictions may regulate use of linkable mortality data for PCOR studies, which may include the types of entities that have standing to request use of the data; the scope of permitted uses; the scope of any specifically precluded uses; requirements for legal, ethics, and/or privacy review; data protection requirements; permitted method(s) of linkage; linkage methodology; and permitted and specifically prescribed uses of research data that include linked mortality data.
- Compendium of policies in all the 57 mortality-reporting jurisdictions, along with relevant logistical information (e.g., points of contact, application process, fees).