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Balancing Access to Health Data and Privacy

A review of the issues and approaches for the future


Julia Lane, Claudia Schur

Access to sensitive micro data should be provided using remote access data enclaves. These enclaves should be built to facilitate the productive, high-quality usage of microdata. In other words, they should support a collaborative environment that facilitates the development and exchange of knowledge about data among data producers and consumers. The experience of the physical and life sciences has shown that it is possible to develop a research community and a knowledge infrastructure around both research questions and the different types of data necessary to answer policy questions. In sum, establishing a virtual organization approach would provided the research community with the ability to move away from individual, or artisan, science, towards the more generally accepted community based approach. Enclave should include a number of features: metadata documentation capacity so that knowledge about data can be shared; capacity to add data so that the data infrastructure can be augmented; communication capacity, such as wikis, blogs and discussion groups so that knowledge about the data can be deepened and incentives for information sharing so that a community of practice can be built. The opportunity to transform micro-data based research through such a organizational infrastructure could potentially be as far-reaching as the changes that have taken place in the biological and astronomical sciences. It is, however, an open research question how such an organization should be established: whether the approach should be centralized or decentralized. Similarly, it is an open research question as to the appropriate metrics of success, and the best incentives to put in place to achieve success.