Don't take your EHR to heaven, donate it to science: legal and research policies for EHR post mortem
- Correspondence to Dr Vojtech Huser, Laboratory for Informatics Development, NIH Clinical Center, 10 Center drive (Rm 10/6-5561), Bethesda, MD 20892, USA;
- Received 31 May 2013
- Revised 2 July 2013
- Accepted 23 July 2013
- Published Online First 21 August 2013
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.