Piloting a deceased subject integrated data repository and protecting privacy of relatives

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.