title: Don't take your EHR to heaven, donate it to science: legal and research policies for EHR post mortem.
abstract: 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.
authors: Laboratory for Informatics Development, NIH Clinical Center, Bethesda, Maryland, USA.
authors: Vojtech
authors: V
authors: Huser
authors: James J
authors: JJ
authors: Cimino
mesh_terms: D035843:Biomedical Research; D003219:Confidentiality / Q000331:legislation & jurisprudence*; D019992:Databases as Topic / Q000331:legislation & jurisprudence; D003643:Death; D057286:Electronic Health Records / Q000331:legislation & jurisprudence*; D033161:Government Regulation; D006801:Humans; D014481:United States
keywords: electronic health record; institutional review board; integrated data repository; post mortem; privacy; research policy
references: Soc Secur Bull. 2001-2002;64(1):45-51
references: 12428517
references: J Am Med Inform Assoc. 2012 Jun;19(e1):e119-24
references: 22437072
references: Epidemiology. 2001 Mar;12(2):259-61
references: 11246590
references: Eur J Public Health. 2012 Feb;22(1):139-44
references: 20926403
references: J Am Med Inform Assoc. 2013 Jan 1;20(1):117-21
references: 22955496
references: Sci Am. 2007 Sep;297(3):126
references: 17784634
references: JAMA. 2013 Apr 3;309(13):1351-2
references: 23549579
references: PLoS One. 2011;6(12):e28071
references: 22164229
references: Am J Bioeth. 2010 Sep;10(9):15-7
references: 20818548
references: Clin Pharmacol Ther. 2008 Sep;84(3):362-9
references: 18500243
references: BMJ. 2009 Jan 27;338:b81
references: 19174434
references: Ann Intern Med. 2012 Aug 7;157(3):207-10
references: 22868839