Jacquemard Tim, Doherty Colin P, Fitzsimons Mary B
FutureNeuro, the SFI Research Centre for Chronic and Rare Neurological Diseases, 123 Stephen's Green, Dublin 2, Ireland.
Department of Neurology, St. James's Hospital, James's Street, Dublin 8, Ireland.
BMC Med Ethics. 2020 Aug 24;21(1):76. doi: 10.1186/s12910-020-00514-1.
Electronic patient record (EPR) technology is a key enabler for improvements to healthcare service and management. To ensure these improvements and the means to achieve them are socially and ethically desirable, careful consideration of the ethical implications of EPRs is indicated. The purpose of this scoping review was to map the literature related to the ethics of EPR technology. The literature review was conducted to catalogue the prevalent ethical terms, to describe the associated ethical challenges and opportunities, and to identify the actors involved. By doing so, it aimed to support the future development of ethics guidance in the EPR domain.
To identify journal articles debating the ethics of EPRs, Scopus, Web of Science, and PubMed academic databases were queried and yielded 123 eligible articles. The following inclusion criteria were applied: articles need to be in the English language; present normative arguments and not solely empirical research; include an abstract for software analysis; and discuss EPR technology.
The medical specialty, type of information captured and stored in EPRs, their use and functionality varied widely across the included articles. Ethical terms extracted were categorised into clusters 'privacy', 'autonomy', 'risk/benefit', 'human relationships', and 'responsibility'. The literature shows that EPR-related ethical concerns can have both positive and negative implications, and that a wide variety of actors with rights and/or responsibilities regarding the safe and ethical adoption of the technology are involved.
While there is considerable consensus in the literature regarding EPR-related ethical principles, some of the associated challenges and opportunities remain underdiscussed. For example, much of the debate is presented in a manner more in keeping with a traditional model of healthcare and fails to take account of the multidimensional ensemble of factors at play in the EPR era and the consequent need to redefine/modify ethical norms to align with a digitally-enabled health service. Similarly, the academic discussion focuses predominantly on bioethical values. However, approaches from digital ethics may also be helpful to identify and deliberate about current and emerging EPR-related ethical concerns.
电子病历(EPR)技术是改善医疗服务与管理的关键推动因素。为确保这些改善措施及其实现方式在社会和伦理层面上是可取的,需要仔细考量电子病历的伦理影响。本范围综述的目的是梳理与电子病历技术伦理相关的文献。进行文献综述是为了编目常见的伦理术语,描述相关的伦理挑战与机遇,并确定涉及的行为主体。通过这样做,旨在支持电子病历领域伦理指导的未来发展。
为了识别讨论电子病历伦理问题的期刊文章,对Scopus、科学引文索引和PubMed学术数据库进行了查询,共获得123篇符合条件的文章。采用了以下纳入标准:文章需为英文;提出规范性论点而非仅进行实证研究;包含用于软件分析的摘要;并讨论电子病历技术。
在所纳入的文章中,医学专业、电子病历中捕获和存储的信息类型、其用途和功能差异很大。提取的伦理术语被归类为“隐私”“自主性”“风险/收益”“人际关系”和“责任”等类别。文献表明,与电子病历相关的伦理问题可能具有积极和消极影响,并且涉及众多在安全和符合伦理地采用该技术方面拥有权利和/或责任的行为主体。
虽然文献中对于与电子病历相关的伦理原则有相当多的共识,但一些相关的挑战和机遇仍未得到充分讨论。例如,许多辩论的呈现方式更符合传统医疗模式,没有考虑到电子病历时代诸多因素的多维综合情况,以及随之而来的重新定义/修改伦理规范以适应数字化医疗服务的必要性。同样,学术讨论主要集中在生物伦理价值上。然而,数字伦理方法也可能有助于识别和思考当前及新出现的与电子病历相关的伦理问题。