title: Privacy by Design at Population Data BC: a case study describing the technical, administrative, and physical controls for privacy-sensitive secondary use of personal information for research in the public interest.
abstract: Population Data BC (PopData) is an innovative leader in facilitating access to linked data for population health research. Researchers from academic institutions across Canada work with PopData to submit data access requests for projects involving linked administrative data, with or without their own researcher-collected data. PopData and its predecessor-the British Columbia Linked Health Database-have facilitated over 350 research projects analyzing a broad spectrum of population health issues. PopData embeds privacy in every aspect of its operations. This case study focuses on how implementing the Privacy by Design model protects privacy while supporting access to individual-level data for research in the public interest. It explores challenges presented by legislation, stewardship, and public perception and demonstrates how PopData achieves both operational efficiencies and due diligence.
authors.affiliation: Population Data BC, School of Population and Public Health, University of British Columbia, Vancouver, Canada. caitlin.hertzman@popdata.bc.ca
authors.forename: Caitlin
authors.initials: C
authors.lastname: Pencarrick Hertzman
authors.forename: Nancy
authors.initials: N
authors.lastname: Meagher
authors.forename: Kimberlyn M
authors.initials: KM
authors.lastname: McGrail
mesh_terms: D035843:Biomedical Research; D001955:British Columbia; D002170:Canada; D003219:Confidentiality; D057286:Electronic Health Records / Q000331:legislation & jurisprudence / Q000458:organization & administration*; D006801:Humans; D033181:Information Dissemination; D019982:Organizational Case Studies