title: Don't take your EHR to heaven, donate it to science: legal and research policies for EHR post mortem.
abstract: Electronic Health Records (EHR) represent a valuable research source. We explore legal and research policies governing EHR use after a patient's death. We describe how the EHR is used after patient's death and how deceased status impacts laws and regulations governing such record. We explore the patient consent mechanism that would support creation of a separate deceased subject integrated data repository (dsIDR) and discuss potential benefit of such repository in comparison with existing query tools, such as the i2b2 cohort estimation query tool, which operate under IRB exemption for reviews preparatory for research. Governance of dsIDR data is compared to regulatory frameworks governing post-mortem management of tissues, organs and corpses as well as digital afterlife of non-healthcare private data.
authors.affiliation: Laboratory for Informatics Development; NIH Clinical Center.
authors.forename: Vojtech
authors.initials: V
authors.lastname: Huser
authors.forename: James J
authors.initials: JJ
authors.lastname: Cimino