The impact of electronic personal health records on the healthcare of patients living with coercive control and abuse

这项拟议研究的目的是确定电子个人健康记录（EPHRs）在一般实践中将对患者、从业人员和其他机构的影响，当患者处于胁迫或虐待关系中时。为了实现这一目标，我打算与那些经历过强迫关系的人密切合作，以确保我的工作能解决他们的关切。到2020年，政府打算使英国的每个成年人都能通过互联网获得电子个人健康记录。这意味着普通大众可以通过个人电脑和智能手机访问患者调查结果、处方、诊断代码以及最终的完整记录。还有一种转变是，将共享信息和记录纳入“糖尿病数字教练”等工具，以帮助患者管理自己的健康状况。有人认为，许多人将从这些变化中受益。诊所已经开始使用基本版或完整版的联机访问系统，并相信它改善了对病人的护理。他们论证的功利主义和义务论基础是显而易见的。他们认为，在线记录为医生和病人带来了解放，并增加了病人对他们的医疗保健的理解和参与。本质上是“没有我就没有关于我的决定”。然而，一些患者处于弱势地位，生活在一个可能与他们最亲近的人操纵和胁迫的环境中，但这些人并不真正把他们的最大利益放在心上，而是利用个人来谋取自己的利益。有人认为，在这种情况下，在家中使用EPHRs可能会增加滥用的风险，并损害某一组患者的医疗保健。EPHRs的支持者认为，患者在虐待关系中的风险可以通过实践来管理（Hannan, 2011），但迄今为止，缺乏关于如何做到这一点的证据。现有的研究表明，在使用EPHRs时，患者的自我管理、知识、沟通、满意度和信任水平有所提高，尽管这是不确定的（Cruickshank et al, 2012）。迄今为止，还没有发表研究，研究这将如何影响某些人群，如处于控制或虐待关系中的人群。

The aim of this proposed research is to establish the impact Electronic Personal Health Records (EPHRs) in general practice will have on patients, practitioners and other agencies when patients are in coercive or abusive relationships. In achieving this aim I intend to work closely with the people who have experienced coercive relationships to ensure that my work addresses their concerns.By 2020 the Government intends that electronic personal health records (EPHR) are accessible to every adult in the UK via the internet. This means that patient investigation results, prescriptions, diagnostic codes and eventually the full record, will be available for the general population to access from their personal computers and smartphones. There is also a shift to incorporate shared information and records into tools such as the 'diabetes digital coach' to help patients manage their health conditions. It is argued that many people will benefit from these changes. Practices have already started to use a basic or full version of the on-line access system and believe that it has brought improvements to the care of their patients. A utilitarian and deontological basis for their arguments is evident. They believe that on-line records are liberating for doctors and patients and increases patient understanding and involvement in their health care. In essence 'no decision about me without me.' However, some patients are in a vulnerable situation and are living in an environment of manipulation and coercion from the people who may be closest to them, but do not genuinely have their best interest at heart and are exploiting the individual for their own gain. It has been suggested that under these circumstances having EPHRs available at home could increase risk of abuse and compromise the healthcare of a certain group of patients. Supporters of EPHRs believe that risks to patients in abusive relationships can be managed by the practice, (Hannan, 2011) however to date there is a lack of evidence on how to do this. Existing studies indicate that there are improved levels of patient self-management, knowledge, communication, satisfaction and trust when using EPHRs although this is inconclusive (Cruickshank et al, 2012) To date no research has been published looking at how this will affect certain groups of the population such as those in controlling or abusive relationships.