title: Policymaking to preserve privacy in disclosure of public health data: a suggested framework.
abstract: Health organisations in Turkey gather a vast amount of valuable individual data that can be used for public health purposes. The organisations use rigid methods to remove some useful details from the data while publishing the rest of the data in a highly aggregated form, mostly because of privacy concerns and lack of standardised policies. This action leads to information loss and bias affecting public health research. Hence, organisations need dynamic policies and well-defined procedures rather than a specific algorithm to protect the privacy of individual data. To address this need, we developed a framework for the systematic application of anonymity methods while reducing and objectively reporting the information loss without leaking confidentiality. This framework acts as a roadmap for policymaking by providing high-level pseudo-policies with semitechnical guidelines in addition to some sample scenarios suitable for policymakers, public health programme managers and legislators.
authors.affiliation: Department of Medical Informatics, Middle East Technical University, Informatics Institute, Ankara, Turkey.
authors.forename: Mehrdad A
authors.initials: MA
authors.lastname: Mizani
authors.affiliation: Department of Medical Informatics, Middle East Technical University, Informatics Institute, Ankara, Turkey.
authors.forename: Nazife
authors.initials: N
authors.lastname: Baykal
mesh_terms: D003219:Confidentiality / Q000941:ethics / Q000331:legislation & jurisprudence / Q000592:standards / Q000639:trends; D030881:Disclosure / Q000331:legislation & jurisprudence / Q000592:standards / Q000639:trends; D006801:Humans; D011050:Policy Making; D018907:Privacy; D011634:Public Health / Q000706:statistics & numerical data*; D011640:Public Policy / Q000639:trends*; D014421:Turkey
keywords: Confidentiality/Privacy; Information Technology; Policy Guidelines/Inst. Review Boards/Review Cttes.; Public Health Ethics