AMIA Annu Symp Proc - Piloting a deceased subject integrated data repository and protecting privacy of relatives.

Tópicos

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{ research(1085) discuss(1038) issu(1018) }
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{ system(1976) rule(880) can(841) }
{ data(1714) softwar(1251) tool(1186) }
{ data(3008) multipl(1320) sourc(1022) }
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Resumo

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.

Resumo Limpo

use deceas subject electron health record can import pilot platform informat biomed research exist legal framework allow research less strict deidentif criteria howev privaci nondeced must protect report creation deceas subject integr data repositori dsidr nation institut health clinic center pilot methodolog remov secondari protect health inform identifi inform secondari pxi inform person primari patient character avail structur code data dsidr report estim frequenc secondari pxi rang sensit token presenc use stricter criteria feder deced ehr data multipl institut can address sampl size limit pilot studi provid lesson learn methodolog can adopt institut

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