Li Edmond, Lounsbury Olivia, Clarke Jonathan, Ashrafian Hutan, Darzi Ara, Neves Ana Luisa
North West London NIHR Patient Safety Research Collaboration, Institute of Global Health Innovation, Imperial College London, Room 1035/7, QEQM Wing, St Mary's Campus, London, W2 1NY, UK.
Global Digital Health Unit, Department of Primary Care and Public Health, Imperial College London, London, UK.
BMC Med Inform Decis Mak. 2024 Dec 3;24(1):370. doi: 10.1186/s12911-024-02789-5.
The proliferation of electronic health records (EHR) in health systems of many high-income countries has ushered in profound changes to how clinical information is used, stored, and disseminated. For patients, being able to easily access and share their health information electronically through interoperable EHRs can often impact safety and their experience when seeking care across healthcare providers. While extensive research exists examining how EHRs affected workflow and technical challenges such as limited interoperability, much of it was done from the viewpoint of healthcare staff rather than from patients themselves. This leaves a critical knowledge gap in our evidence base to inform better implementation of health information technologies which needs addressing.
This study aimed to explore how patients with chronic conditions or polypharmacy and their caregivers perceive the current state of EHR interoperability, identify instances where it was associated with negative health outcomes, and elucidate patient-driven recommendations to address concerns raised.
A total of 18 patients and caregivers participated in five online focus groups between May-July 2022. Thematic analysis was performed to generate codes and derive higher-order themes.
Participants highlighted that EHR interoperability in the NHS does not meet patient needs and expectations. While patients' understanding of the concept of EHR interoperability was mixed, most were able to describe how the inability to seamlessly share health information within EHR has negatively impacted care. Limited interoperability contributed to inaccurate medical records, perpetuated existing incorrect information, impaired clinical decision-making, and often required patients to resort to using workarounds. Patients also voiced ideas for potential solutions for consideration. These included a move towards a one-centralised system approach, strengthening data security measures to augment other efforts to increase interoperability, prioritising health information technology training for NHS staff, and involving more allied health professionals and patients themselves in the EHR data curation process.
Our study contributes to the existing body of literature by providing the perspectives of patients and carers most likely to encounter interoperability challenges and therefore those most ideally positioned to propose potential solutions. As highlighted by patients, researchers and policymakers should consider social, educational, and organisational solutions, in addition to technical solutions. Lack of interoperability (i.e., the ability to share a patient's health information electronically between healthcare providers) can affect the quality of care received. However, much of the existing research was done from the viewpoint of healthcare staff rather than from patients themselves. This study explored the views of patients regarding what they feel interoperability in the NHS is currently like, how they think it affects their care, and what they think can be done to improve it. Patients reported interoperability to often be poor. It caused inconvenience both to themselves and their healthcare provider, and negatively impacted their experience getting care overall. Patient suggestions for improvement included centralising and reducing the number of existing systems, having more training for healthcare staff, and supporting patients and other healthcare staff in managing their health data.
许多高收入国家卫生系统中电子健康记录（EHR）的普及，给临床信息的使用、存储和传播方式带来了深刻变化。对于患者而言，能够通过可互操作的电子健康记录轻松地电子访问和共享其健康信息，往往会影响其在跨医疗服务提供者寻求护理时的安全性和体验。虽然已有大量研究探讨电子健康记录如何影响工作流程以及诸如互操作性有限等技术挑战，但其中大部分是从医护人员的角度进行的，而非患者自身的角度。这在我们的证据基础中留下了关键的知识空白，需要加以填补，以更好地实施健康信息技术。
本研究旨在探讨患有慢性病或使用多种药物治疗的患者及其护理人员如何看待电子健康记录互操作性的现状，识别其与负面健康结果相关的情况，并阐明患者驱动的建议以解决所提出的问题。
2022年5月至7月期间，共有18名患者和护理人员参加了5个在线焦点小组。进行了主题分析以生成代码并得出高阶主题。
参与者强调，英国国家医疗服务体系（NHS）中的电子健康记录互操作性未满足患者的需求和期望。虽然患者对电子健康记录互操作性概念的理解不一，但大多数人能够描述电子健康记录内无法无缝共享健康信息如何对护理产生了负面影响。互操作性有限导致病历不准确，使现有错误信息持续存在，损害临床决策，并且常常要求患者采取变通方法。患者还提出了一些可供考虑的潜在解决方案。这些包括转向单一集中系统方法，加强数据安全措施以增强其他提高互操作性的努力，优先为NHS工作人员提供健康信息技术培训，以及让更多的专职医疗专业人员和患者自身参与电子健康记录数据管理过程。
我们的研究通过提供最有可能遇到互操作性挑战、因此最适合提出潜在解决方案的患者和护理人员的观点，为现有文献做出了贡献。正如患者所强调的，研究人员和政策制定者除了技术解决方案外，还应考虑社会、教育和组织方面的解决方案。缺乏互操作性（即在医疗服务提供者之间电子共享患者健康信息的能力）会影响所接受护理的质量。然而，现有研究大多是从医护人员的角度进行的，而非患者自身的角度。本研究探讨了患者对他们认为NHS目前的互操作性状况、其如何影响他们的护理以及如何改进的看法。患者报告称互操作性通常较差。这给他们自己和医疗服务提供者都带来了不便，并对他们总体的就医体验产生了负面影响。患者提出的改进建议包括集中并减少现有系统的数量、为医护人员提供更多培训，以及支持患者和其他医护人员管理他们自己的健康数据。
