Who Owns the Data? Open Data for Healthcare

被引：120
|
作者：
Kostkova, Patty [1 ]
Brewer, Helen [2 ]
de Lusignan, Simon [3 ,4 ]
Fottrell, Edward [5 ]
Goldacre, Ben [6 ]
Hart, Graham [5 ]
Koczan, Phil [7 ]
Knight, Peter [8 ]
Marsolier, Corinne [9 ]
McKendry, Rachel A. [10 ,11 ]
Ross, Emma [12 ]
Sasse, Angela [1 ]
Sullivan, Ralph [13 ]
Chaytor, Sarah [14 ]
Stevenson, Olivia [14 ]
Velho, Raquel [15 ]
Tooke, John [16 ]
机构：
[1] UCL, Dept Comp Sci, London, England
[2] Parliamentary Off Sci & Technol, London, England
[3] Univ Surrey, Dept Clin & Expt Med, Guildford, Surrey, England
[4] Royal Coll Gen Practitioners, Res & Surveillance Ctr, London, England
[5] UCL, Fac Populat Hlth Sci, London, England
[6] London Sch Hyg & Trop Med, London, England
[7] UCLP, London, England
[8] Dept Hlth, London, England
[9] Cisco Consulting Serv Life Sci Hlth & Care, Paris, France
[10] UCL, London Ctr Nanotechnol, London, England
[11] UCL, Div Med, London, England
[12] Chatham House Ctr Global Hlth Secur, London, England
[13] Royal Coll Gen Practitioners, Hlth Informat Grp, London, England
[14] UCL, UCL Publ Policy, London, England
[15] UCL, Dept Sci & Technol Studies, London, England
[16] UCL, Sch Life & Med Sci, London, England
来源：
FRONTIERS IN PUBLIC HEALTH | 2016年 / 4卷
基金：
英国工程与自然科学研究理事会;
关键词：
open data; data ownership; healthcare EPR; privacy; data policy;
D O I：
10.3389/fpubh.2016.00007
中图分类号：
R1 [预防医学、卫生学];
学科分类号：
1004 ; 120402 ;
摘要：
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, through increasing popularity of social media, GPS-enabled mobile apps and tracking/wearable devices, the IT industry and MedTech giants are pursuing new projects without clear public and policy discussion about ownership and responsibility for user-generated data. In the absence of transparent regulation, this paper addresses the opportunities of Big Data in healthcare together with issues of responsibility and accountability. It also aims to pave the way for public policy to support a balanced agenda that safeguards personal information while enabling the use of data to improve public health.
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