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Personal Health Identifiers and the anonymization of health data: Notes from SFLC round-table on IT in Healthcare

MediaNama attended a round-table discussion on April 27th by SFLC.in on policy enabling Information Technology in healthcare. The round-table aimed to discuss questions around current and future regulation, the effect of government policy and technical aspects of providing healthcare using IT. Below are the main points made during the discussion. Quotes are paraphrased and not verbatim, they are unattributed since the discussion was held under Chatham House Rule. Treatment of personal health identifiers Personal health identifier: Anything that makes a person identifiable and pinpoints who the person is can be their Personal Health Identifier, this includes name, gender, house number. I suspect how much of anonymized data is actually anonymous. Hospitals today take blanket consent without the patient having specific understanding of what his/her consent means. What's the consent taken if you have an Apple Watch which is collecting your real-time ECG data. We need to ask whether consent for use and collection of that data is taken, especially considering that it isn't patient data but simply consumer data. There are 18 PHIs under US federal law Health Insurance Portability and Accountability Act, 1996 (HIPAA), including credit card number, phone number, social security number, registration card. Anything that identifies me - including as date-of-birth, or date-of-birth associated with another ID - is a PHI, which then needs to be deidentified. In India, this would include Aadhaar number. Personal Health Identifier needs to be anonymised or masked; and consent is required for transferring this data between parties. For example, if I'm…

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