Data dreams: planning for the future of historical medical documents

Lorraine Dong, Polina Ilieva, Aimee Medeiros

Abstract


Historical medical collections with privacy-sensitive information are a potentially rich source of social, behavioral, and economic data for a wide array of researchers. They remain relatively undiscoverable and at risk for destruction, however, because of their restricted content and challenging media formats. Team members from two institutions—the University of California, San Francisco, and the University of Texas at Austin—present their respective initiatives to create digital archives and databases that address the privacy and technological challenges of such collections. In doing so, they also argue for the importance (and feasibility) of medical libraries and archives to take the initiative to preserve and make accessible historical patient data.

Keywords


Access; Privacy; Digitization; Archives

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References


Department of Health and Human Services (US). Modifications to the HIPAA privacy, security, enforcement, and breach notification rules under the Health Information Technology for Economic and Clinical Health Act and the Genetic Information Nondiscrimination Act; other modifications to the HIPAA rules. final rules. Fed Regist. 2013 Jan 25;78(17):5565–702.

Wailoo K. How cancer crossed the color line. New York, NY: Oxford University Press; 2011.




DOI: https://doi.org/10.5195/jmla.2018.444

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Copyright (c) 2018 Lorraine Dong, Polina Ilieva, Aimee Medeiros

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