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J Am Med Inform Assoc · Jan 2014
Don't take your EHR to heaven, donate it to science: legal and research policies for EHR post mortem.
- Vojtech Huser and James J Cimino.
- Laboratory for Informatics Development, NIH Clinical Center, Bethesda, Maryland, USA.
- J Am Med Inform Assoc. 2014 Jan 1;21(1):8-12.
AbstractRecently, 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.
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