Who Owns the Data? Open Data for Healthcare

作者：Patty Kostkova, Helen M. Brewer, Simon de Lusignan, Edward F. Fottrell, Ben M. Goldacre, Graham J. Hart, Phil Koczan, Peter A. Knight, Corinne Marsolier, Rachel A. McKendry, Emma Ross, Angela Sasse, Ralph Sullivan, Sarah Chaytor, Olivia Stevenson, Raquel Velho, John E. Tooke · 发表于：Frontiers in Public Health · 年份：2016 · DOI：10.3389/fpubh.2016.00007 · 被引用次数：240 · 研究领域：Data-Driven Disease Surveillance、Mobile Health and mHealth Applications、Privacy, Security, and Data Protection

Research on large shared medical datasets and data-driven research are gaining fast momentum and provide major opportunities for improving health systems as well as individual care. Such open data can shed light on the causes of disease and effects of treatment, including adverse reactions side-effects of treatments, while also facilitating analyses tailored to an individual's characteristics, known as personalized or "stratified medicine." Developments, such as crowdsourcing, participatory surveillance, and individuals pledging to become "data donors" and the "quantified self" movement (where citizens share data through mobile device-connected technologies), have great potential to contribute to our knowledge of disease, improving diagnostics, and delivery of -healthcare and treatment. There is not only a great potential but also major concerns over privacy, confidentiality, and control of data about individuals once it is shared. Issues, such as user trust, data privacy, transparency over the control of data ownership, and the implications of data analytics for personal privacy with potentially intrusive inferences, are becoming increasingly scrutinized at national and international levels. This can be seen in the recent backlash over the proposed implementation of care.data, which enables individuals' NHS data to be linked, retained, and shared for other uses, such as research and, more controversially, with businesses for commercial exploitation. By way of contrast, throu...