1 thenatureofbiomedicaldata thenatureofbiomedicaldata

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Unformatted text preview: arge “Anonymous” Medicare Data Date registered Party affiliation Date last voted Voter List Latanya Sweeney, MIT, 1997 Uniqueness in Cambridge voters Birth date alone Birth date & gender Birth date & 5-digit ZIP Birth date & full postal code 12% 29% 69% 97% Birth date includes month, day and year. Total 54,805 voters. Information Security Elements • Availability ­ when and where needed • Authentication ­a person or system is who they purport to be (preceded by Identification) • Access Control ­ only authorized persons, for authorized uses • Confidentiality ­ no unauthorized information disclosure • Integrity ­ Information content not alterable except under authorized circumstances • Attribution/non­repudiation ­ actions taken are reliably traceable Why is this so hard in Why is this so hard in healthcare contexts? 1. The nature of biomedical data The nature of biomedical data The nature of biomedical data • Variable levels of sensitivity; “sensitive” is in the eye of multiple beholders, and highly context­ dependent • No bright line between person­identifiable and “anonymous” data – So inherently rich in attributes that re­identification potential never reaches zero • Genome as Future Diary: An individual’s medical data may have implications for other family members who have much different values and preferences, and for future generations Why is this so hard? Why is this so hard? 1. 2. The nature of biomedical data Complex interpersonal and organizational roles with respect to data Complex roles: entities with justifiable Complex roles: entities with justifiable (and variable) rights to medical data • First order role definitions: – Provider, Patient, Payer, “Society” • Second order: – Providers: primary vs. consultant provider, ancillary support staff – Patient: self, family, legally authorized reps – Payer: billing staff and subcontr...
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