Papoutsi Chrysanthi, Reed Julie E, Marston Cicely, Lewis Ruth, Majeed Azeem, Bell Derek
NIHR CLAHRC Northwest London, Imperial College London, Chelsea & Westminster Hospital NHS Foundation Trust, London, UK.
Department of Primary Care Health Sciences, University of Oxford, Oxford, UK.
BMC Med Inform Decis Mak. 2015 Oct 14;15:86. doi: 10.1186/s12911-015-0202-2.
Although policy discourses frame integrated Electronic Health Records (EHRs) as essential for contemporary healthcare systems, increased information sharing often raises concerns among patients and the public. This paper examines patient and public views about the security and privacy of EHRs used for health provision, research and policy in the UK.
Sequential mixed methods study with a cross-sectional survey (in 2011) followed by focus group discussions (in 2012-2013). Survey participants (N = 5331) were recruited from primary and secondary care settings in West London (UK). Complete data for 2761 (51.8 %) participants were included in the final analysis for this paper. The survey results were discussed in 13 focus groups with people living with a range of different health conditions, and in 4 mixed focus groups with patients, health professionals and researchers (total N = 120). Qualitative data were analysed thematically.
In the survey, 79 % of participants reported that they would worry about the security of their record if this was part of a national EHR system and 71 % thought the National Health Service (NHS) was unable to guarantee EHR safety at the time this work was carried out. Almost half (47 %) responded that EHRs would be less secure compared with the way their health record was held at the time of the survey. Of those who reported being worried about EHR security, many would nevertheless support their development (55 %), while 12 % would not support national EHRs and a sizeable proportion (33 %) were undecided. There were also variations by age, ethnicity and education. In focus group discussions participants weighed up perceived benefits against potential security and privacy threats from wider sharing of information, as well as discussing other perceived risks: commercial exploitation, lack of accountability, data inaccuracies, prejudice and inequalities in health provision.
Patient and public worries about the security risks associated with integrated EHRs highlight the need for intensive public awareness and engagement initiatives, together with the establishment of trustworthy security and privacy mechanisms for health information sharing.
尽管政策讨论将集成电子健康记录（EHRs）视为当代医疗系统的核心要素，但信息共享的增加往往引发患者和公众的担忧。本文探讨了英国患者和公众对于用于医疗服务、研究及政策制定的电子健康记录的安全性和隐私性的看法。
采用顺序混合方法研究，先是进行了一项横断面调查（2011年），随后是焦点小组讨论（2012 - 2013年）。调查参与者（N = 5331）从英国伦敦西部的初级和二级医疗机构招募。本文的最终分析纳入了2761名（51.8%）参与者的完整数据。在13个焦点小组中与患有不同健康状况的人群讨论了调查结果，在4个混合焦点小组中与患者、医疗专业人员和研究人员进行了讨论（总人数N = 120）。对定性数据进行了主题分析。
在调查中，79%的参与者表示，如果他们的记录是国家电子健康记录系统的一部分，他们会担心其安全性，71%的人认为在开展这项工作时，国民医疗服务体系（NHS）无法保证电子健康记录的安全。近一半（47%）的人回应称，与调查时他们的健康记录保存方式相比，电子健康记录的安全性会更低。在那些表示担心电子健康记录安全性的人中，许多人仍然会支持其发展（55%），而12%的人不支持国家电子健康记录，相当一部分人（33%）未作决定。在年龄、种族和教育程度方面也存在差异。在焦点小组讨论中，参与者权衡了信息更广泛共享带来的预期益处与潜在的安全和隐私威胁，同时也讨论了其他感知到的风险：商业利用、缺乏问责制、数据不准确、偏见以及医疗服务中的不平等。
患者和公众对集成电子健康记录相关安全风险的担忧凸显了开展强化公众意识和参与活动的必要性，同时也需要建立可靠的健康信息共享安全和隐私机制。
