Don't take your EHR to heaven, donate it to science: legal and research policies for EHR post mortem

J Am Med Inform Assoc. Jan-Feb 2014;21(1):8-12. doi: 10.1136/amiajnl-2013-002061. Epub 2013 Aug 21.


Recently, an important public debate emerged about the digital afterlife of any personal data stored in the cloud. Such debate brings also to attention the importance of transparent management of electronic health record (EHR) data of deceased patients. In this perspective paper, we look at legal and regulatory policies for EHR data post mortem. We analyze observational research situations using EHR data that do not require institutional review board approval. We propose creation of a deceased subject integrated data repository (dsIDR) as an effective tool for piloting certain types of research projects. We highlight several dsIDR challenges in proving death status, informed consent, obtaining data from payers and healthcare providers and the involvement of next of kin.

Keywords: electronic health record; institutional review board; integrated data repository; post mortem; privacy; research policy.

Publication types

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

MeSH terms

  • Biomedical Research*
  • Confidentiality / legislation & jurisprudence*
  • Databases as Topic* / legislation & jurisprudence
  • Death
  • Electronic Health Records / legislation & jurisprudence*
  • Government Regulation
  • Humans
  • United States