title: Piloting a deceased subject integrated data repository and protecting privacy of relatives.
abstract: Use of deceased subject Electronic Health Records can be an important piloting platform for informatics or biomedical research. Existing legal framework allows such research under less strict de-identification criteria; however, privacy of non-decedent must be protected. We report on creation of the decease subject Integrated Data Repository (dsIDR) at National Institutes of Health, Clinical Center and a pilot methodology to remove secondary protected health information or identifiable information (secondary PxI; information about persons other than the primary patient). We characterize available structured coded data in dsIDR and report the estimated frequencies of secondary PxI, ranging from 12.9% (sensitive token presence) to 1.1% (using stricter criteria). Federating decedent EHR data from multiple institutions can address sample size limitations and our pilot study provides lessons learned and methodology that can be adopted by other institutions.
authors.affiliation: Laboratory for Informatics Development; National Institutes of Health, Clinical Center.
authors.forename: Vojtech
authors.initials: V
authors.lastname: Huser
authors.affiliation: National Library of Medicine, Bethesda, MD, USA.
authors.forename: Mehmet
authors.initials: M
authors.lastname: Kayaalp
authors.affiliation: National Library of Medicine, Bethesda, MD, USA.
authors.forename: Zeyno A
authors.initials: ZA
authors.lastname: Dodd
authors.affiliation: Laboratory for Informatics Development; National Institutes of Health, Clinical Center ; National Library of Medicine, Bethesda, MD, USA.
authors.forename: James J
authors.initials: JJ
authors.lastname: Cimino
mesh_terms: D035843:Biomedical Research; D016494:Computer Security; D003219:Confidentiality; D019992:Databases as Topic; D003643:Death; D057286:Electronic Health Records; D005190:Family; D020408:Health Insurance Portability and Accountability Act; D006801:Humans; D009316:National Institutes of Health (U.S.); D018907:Privacy; D014481:United States