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Patient Privacy and Security , Not a zero sum game!

An invited paper in a special edition of "Australasian Epidemiologist" on ethics and privacy.

Abstract

All too often in the debate over electronic health records, the interests of the individual and of the broader community are thought to be at odds. The patient’s fundamental right to privacy is generally assumed to be best served by an opt-in rule requiring their explicit up-front consent to participate. Yet the benefits to population health and medical research of a comprehensive record depend on the completeness of the data and a freedom from bias, both of which may be compromised unless the vast majority do in fact opt-in. Is this tension between individual and community unavoidable? The answer may lie in new security technologies such as smartcards, which can help de-identify event summaries written into the record, while preserving the patient’s explicit control over the process. If fundamental privacy protections can be built into the architecture of electronic health record systems and health identifiers, then the de facto rule might be safely changed from opt-in to opt-out, with significant improvements in participation rates and consequentially the usefulness of population health data.