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当患者处于强迫或虐待关系时，电子个人健康记录(EPHR)在一般实践中将对患者、从业者和其他机构产生的影响。为了实现这一目标，我打算与经历过强迫关系的人密切合作，确保我的工作解决他们的关切。到2020年，政府打算让英国所有成年人都能通过互联网获得电子个人健康记录(EPHR)。这意味着，普通民众可以通过个人电脑和智能手机获取患者调查结果、处方、诊断代码以及最终的完整记录。此外，还出现了一种转变，即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。有人争辩说，许多人将从这些变化中受益。实践者已经开始使用基本版本或完整版本的在线访问系统，并相信它改善了对患者的护理。他们论证的功利论和道义论基础显而易见。他们认为，在线记录为医生和患者带来了解放，并增加了患者对他们的医疗保健的了解和参与。从本质上讲，“没有我，我就没有决定。”然而，一些患者处于脆弱的境地，生活在可能与他们最亲近的人操纵和胁迫的环境中，但并没有真正将他们的最佳利益放在心上，为了自己的利益而剥削个人。有人建议，在这种情况下，在家中提供EPHR可能会增加滥用的风险，并损害特定患者群体的医疗保健。EPHR的支持者认为，处于虐待关系中的患者的风险可以通过这种做法来管理，(Hannan，2011)然而，到目前为止，还缺乏关于如何做到这一点的证据。现有研究表明，在使用EPHR时，患者的自我管理、知识、沟通、满意度和信任水平都有所提高，尽管这还不是决定性的(Cruickshank等人，2012)，到目前为止，还没有研究发表这将如何影响某些人群，如那些处于控制或虐待关系中的群体。

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.