Healthcare Innovation and Policy Unit, Centre for Health Sciences, Barts and the London School of Medicine and Dentistry, London E1 2AT, UK.
BMJ. 2010 Nov 16;341:c5814. doi: 10.1136/bmj.c5814.
To evaluate the policy making process, implementation by NHS organisations, and patients' and carers' experiences of efforts to introduce an internet accessible personal electronic health record (HealthSpace) in a public sector healthcare system.
Mixed method, multilevel case study.
English National Health Service; the basic HealthSpace technology (available throughout England) and the advanced version (available in a few localities where this option had been introduced) were considered.
National statistics on invitations sent, HealthSpace accounts created, and interviews and ethnographic observation of patients and carers. Data analysis was informed by a socio-technical approach which considered macro and micro influences on both adoption and non-adoption of innovations, and by the principles of critical discourse analysis.
56 patients and carers (of whom 21 opened a basic HealthSpace account, 20 had diabetes but were not initially using HealthSpace, and 15 used advanced HealthSpace accounts to exchange messages with their general practitioner), 3000 pages of documents (policies, strategies, business plans, minutes of meetings, correspondence), observational field notes, and 160 interviews with policy makers, project managers, and clinical staff.
Between 2007 and October 2010, 172 950 people opened a basic HealthSpace account. 2913 (0.13% of those invited) opened an advanced account, compared with 5-10% of the population anticipated in the original business case. Overall, patients perceived HealthSpace as neither useful nor easy to use and its functionality aligned poorly with their expectations and self management practices. Those who used email-style messaging were positive about its benefits, but enthusiasm beyond three early adopter clinicians was low, and fewer than 100 of 30 000 patients expressed interest. Policy makers' hopes that "deploying" HealthSpace would lead to empowered patients, personalised care, lower NHS costs, better data quality, and improved health literacy were not realised over the three year evaluation period.
Unless personal electronic health records align closely with people's attitudes, self management practices, identified information needs, and the wider care package (including organisational routines and incentive structures for clinicians), the risk that they will be abandoned or not adopted at all is substantial. Conceptualising such records dynamically (as components of a socio-technical network) rather than statically (as containers for data) and employing user centred design techniques might improve their chances of adoption and use. The findings raise questions about how eHealth programmes in England are developed and approved at policy level.
评估 NHS 组织实施互联网可及个人电子健康记录（HealthSpace）的政策制定过程，以及患者和护理人员的体验。
混合方法，多层次案例研究。
英国国家医疗服务体系；基本 HealthSpace 技术（在英格兰各地均可使用）和高级版本（在少数已引入该选项的地方可用）均被考虑在内。
邀请发送、HealthSpace 账户创建的国家统计数据，以及对患者和护理人员的访谈和民族志观察。数据分析受到社会技术方法的启发，该方法考虑了创新采用和不采用的宏观和微观影响，以及批判性话语分析的原则。
56 名患者和护理人员（其中 21 人开设了基本 HealthSpace 账户，20 人患有糖尿病但最初未使用 HealthSpace，15 人使用高级 HealthSpace 账户与他们的全科医生交换信息），3000 页文件（政策、战略、业务计划、会议记录、信件）、观察现场记录和 160 次与政策制定者、项目经理和临床工作人员的访谈。
2007 年至 2010 年 10 月期间，有 172950 人开设了基本 HealthSpace 账户。2913 人（邀请人数的 0.13%）开设了高级账户，而原始业务案例预计的比例为 5-10%。总体而言，患者认为 HealthSpace 既不实用也不易用，其功能与他们的期望和自我管理实践不符。那些使用电子邮件式消息传递的人对其好处持肯定态度，但除了早期采用的 3 位临床医生之外，热情不高，在 30000 名患者中，只有不到 100 人表示有兴趣。在三年的评估期间，政策制定者希望“部署”HealthSpace 将导致患者更有能力、个性化护理、降低 NHS 成本、提高数据质量和改善健康素养的期望并未实现。
除非个人电子健康记录与人们的态度、自我管理实践、已确定的信息需求以及更广泛的护理方案（包括组织惯例和临床医生的激励结构）紧密结合，否则它们被放弃或根本不被采用的风险很大。将此类记录动态地（作为社会技术网络的组成部分）而不是静态地（作为数据的容器）概念化，并采用以用户为中心的设计技术，可能会提高它们被采用和使用的机会。这些发现引发了关于英格兰电子健康计划如何在政策层面上开发和批准的问题。
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