“As the digitization of health records makes it easier and more cost effective to share and analyze health data, policymakers and businesses are increasingly looking to use health data for secondary purposes uses beyond that for which the health data were originally collected. For example, health data that were primarily collected for treatment or payment can be valuable for such secondary uses as population-scale research and public health surveillance. Done properly, many secondary uses of health data can provide substantial benefits to patients and aid the creation of a more effective, information-driven health care system. Secondary use initiatives should be undertaken in a way that maximizes the confidentiality and security of patient data and preserves the trust of both health care providers and the public. While a strong policy framework based on Fair Information Practices is critical to achieve this balance, the technical architecture of information exchange which is the focus of this paper is another important factor. Currently, many government programs using health claims for secondary purposes collect and retain the data in a centralized fashion. The key message of this paper is that decentralized alternatives can achieve most secondary use program goals in a manner that is more protective of privacy and security in the long term.”
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