Ennis Liam, Robotham Dan, Denis Mike, Pandit Ninjeri, Newton Dave, Rose Diana, Wykes Til
King's College London, Institute of Psychiatry, De Crespigny Park, London, SE5 8AF, UK.
South London and Maudsley NHS Foundation Trust, London, UK.
BMC Psychiatry. 2014 Nov 18;14:305. doi: 10.1186/s12888-014-0305-9.
Previous attempts to implement electronic Personal Health Records (ePHRs) underline the importance of stakeholder involvement. We describe the development of an ePHR for people with severe and enduring mental health problems, and provide a model of involving stakeholders throughout.
There were three stages to the development of the ePHR. These were 1) identifying and responding to user and clinical needs; 2) preliminary testing; and 3) preliminary implementation. Stakeholder involvement was pervasive in all stages. We collaborated with 133 stakeholders in the first stage, 13 in the second, and 26 in the third. On the micro-level, a service user researcher conducted much of the data collection and analysis. On the macro-level, a service user advisory group guided decisions throughout the project, and a service user was an active member of the project executive board and the implementation team.
Service users and clinicians preferred an interactive ePHR with features such as access to care plans and care notes, a mood tracker, patient reported outcomes feeding into the clinical record, and social networking features. Many of the above were constructed following consultation with the relevant professionals, however further consultation is required before building a social networking function or providing access to full care notes. Service users positively rated the usability of the ePHR. Drop-in sessions helped service users access technology and learn how to use the ePHR.
We outline four considerations for future developers of ePHRs: appeal, construction, ease of use, and implementation. Success rests on implementation in routine practice, so ePHRs must be intuitive and useful for both service users and staff. Continued involvement of end users throughout the design and testing process can help to achieve this goal.
此前实施电子个人健康记录（ePHR）的尝试凸显了利益相关者参与的重要性。我们描述了一种针对严重且持续性心理健康问题患者的ePHR的开发过程，并提供了一个让利益相关者全程参与的模式。
ePHR的开发有三个阶段。分别是：1）识别并回应用户和临床需求；2）初步测试；3）初步实施。利益相关者的参与贯穿于所有阶段。在第一阶段，我们与133名利益相关者合作，第二阶段有13名，第三阶段有26名。在微观层面，一名服务用户研究员进行了大部分的数据收集和分析工作。在宏观层面，一个服务用户咨询小组在整个项目过程中指导决策，一名服务用户是项目执行委员会和实施团队的积极成员。
服务用户和临床医生更喜欢具有以下功能的交互式ePHR：能够访问护理计划和护理记录、情绪跟踪器、患者报告结果录入临床记录以及社交网络功能。上述许多功能是在与相关专业人员协商后构建的，然而，在构建社交网络功能或提供完整护理记录访问权限之前，还需要进一步协商。服务用户对ePHR的可用性给予了积极评价。临时接待服务帮助服务用户接触技术并学习如何使用ePHR。
我们为未来ePHR的开发者概述了四点考虑因素：吸引力、构建、易用性和实施。成功取决于在日常实践中的实施，因此ePHR必须对服务用户和工作人员来说直观且有用。终端用户在整个设计和测试过程中的持续参与有助于实现这一目标。
