Piloting a deceased subject integrated data repository and protecting privacy of relatives

AMIA Annu Symp Proc. 2014 Nov 14;2014:719-28. eCollection 2014.


Use of deceased subject Electronic Health Records can be an important piloting platform for informatics or biomedical research. Existing legal framework allows such research under less strict de-identification criteria; however, privacy of non-decedent must be protected. We report on creation of the decease subject Integrated Data Repository (dsIDR) at National Institutes of Health, Clinical Center and a pilot methodology to remove secondary protected health information or identifiable information (secondary PxI; information about persons other than the primary patient). We characterize available structured coded data in dsIDR and report the estimated frequencies of secondary PxI, ranging from 12.9% (sensitive token presence) to 1.1% (using stricter criteria). Federating decedent EHR data from multiple institutions can address sample size limitations and our pilot study provides lessons learned and methodology that can be adopted by other institutions.

Publication types

  • Research Support, N.I.H., Intramural

MeSH terms

  • Biomedical Research*
  • Computer Security*
  • Confidentiality
  • Databases as Topic*
  • Death
  • Electronic Health Records*
  • Family
  • Health Insurance Portability and Accountability Act
  • Humans
  • National Institutes of Health (U.S.)
  • Privacy*
  • United States