期刊
JOURNAL OF MEDICAL ETHICS
卷 46, 期 6, 页码 367-377出版社
BMJ PUBLISHING GROUP
DOI: 10.1136/medethics-2019-105472
关键词
stakeholder participation; medical text; natural language processing; text mining; privacy; healthcare
资金
- UK Healthcare Text Analytics Network - Engineering and Physical Sciences Research Council
- EPSRC [EP/N027280/1] Funding Source: UKRI
- MRC [MR/K006665/1, MR/S004025/1] Funding Source: UKRI
Background Use of routinely collected patient data for research and service planning is an explicit policy of the UK National Health Service and UK government. Much clinical information is recorded in free-text letters, reports and notes. These text data are generally lost to research, due to the increased privacy risk compared with structured data. We conducted a citizens' jury which asked members of the public whether their medical free-text data should be shared for research for public benefit, to inform an ethical policy. Methods Eighteen citizens took part over 3 days. Jurors heard a range of expert presentations as well as arguments for and against sharing free text, and then questioned presenters and deliberated together. They answered a questionnaire on whether and how free text should be shared for research, gave reasons for and against sharing and suggestions for alleviating their concerns. Results Jurors were in favour of sharing medical data and agreed this would benefit health research, but were more cautious about sharing free-text than structured data. They preferred processing of free text where a computer extracted information at scale. Their concerns were lack of transparency in uses of data, and privacy risks. They suggested keeping patients informed about uses of their data, and giving clear pathways to opt out of data sharing. Conclusions Informed citizens suggested a transparent culture of research for the public benefit, and continuous improvement of technology to protect patient privacy, to mitigate their concerns regarding privacy risks of using patient text data.
作者
我是这篇论文的作者
点击您的名字以认领此论文并将其添加到您的个人资料中。
推荐
暂无数据