Department of Public Health and Primary Care, Research Group Philosophy of Medicine and Ethics, Ghent University; Ghent, Belgium.
Department of Philosophy and Moral Sciences, Ghent University; Ghent, Belgium.
J Eval Clin Pract. 2021 Apr;27(2):429-437. doi: 10.1111/jep.13465. Epub 2020 Sep 4.
The collection, storage and exchange of medical information are becoming increasingly complex. More parties are involved in this process, and the data are expected to serve many different purposes beside patient care. This raises several ethical questions regarding privacy, data ownership, security and confidentiality. It is vital to consider patients' moral attitudes and preferences in this digital information exchange. The voice of vulnerable patients is rarely heard in research addressing these questions. This study aims to address this void.
Fourteen vulnerable patients without prior experience with patient portal systems were interviewed for this study. First, participants were introduced to the portal and given time to read their personal medical data. Afterwards, semi-structured interviews were conducted and analysed thematically to explore participants' first experience with the portal and their views on sharing medical information with care providers and other parties.
Data analysis resulted in four themes: barriers to and benefits of portal access, emotional responses to reading medical information, diverging views on sharing information with third parties and balancing granular control and the best possible care. First, participants appreciated access to their health information in the portal despite experiencing obstacles. Second, reading medical information online could evoke emotional responses. Third, patients were generally unaware of the meaning and value of medical data to third parties, resulting in inconsistent views on data sharing. Finally, although patients generally supported granular control, they were willing to give up on their autonomy if that would ensure them to receive the best possible care.
Patient portal design should take into consideration the obstacles that discourage vulnerable patients' access and hamper meaningful use. There is a need for more transparency on secondary use of medical data by third parties. Patients should be better informed about the potential consequences of sharing data with them.
医疗信息的收集、存储和交流变得越来越复杂。更多的利益相关者参与到这个过程中，并且数据除了用于患者护理外，还预计将用于许多不同的目的。这引发了一些关于隐私、数据所有权、安全性和保密性的伦理问题。在这个数字信息交换中，考虑患者的道德态度和偏好至关重要。在研究这些问题时，很少听到弱势群体患者的声音。本研究旨在弥补这一空白。
本研究对 14 名没有使用过患者门户系统经验的弱势患者进行了访谈。首先，参与者被介绍给门户，并留出时间阅读他们的个人医疗数据。然后，进行半结构化访谈，并进行主题分析，以探讨参与者首次使用门户的体验，以及他们对与护理提供者和其他方共享医疗信息的看法。
数据分析产生了四个主题：门户访问的障碍和益处、阅读医疗信息的情绪反应、与第三方共享信息的不同观点以及平衡细粒度控制和最佳护理。首先，尽管参与者遇到了障碍，但他们很欣赏能够在门户中访问自己的健康信息。其次，在线阅读医疗信息可能会引起情绪反应。第三，患者通常不清楚医疗数据对第三方的意义和价值，导致对数据共享的看法不一致。最后，尽管患者普遍支持细粒度控制，但如果这能确保他们获得最佳护理，他们愿意放弃自主权。
患者门户的设计应考虑到阻碍弱势患者访问和阻碍有意义使用的障碍。有必要提高第三方对医疗数据二次使用的透明度。应更好地告知患者与第三方共享数据的潜在后果。
