College of Medicine, Swansea University, Swansea, UK.
Int J Med Inform. 2013 Nov;82(11):1104-10. doi: 10.1016/j.ijmedinf.2013.07.005. Epub 2013 Sep 7.
Internet-based health registers are increasingly commonly used for health promotion and medical research, yet little is known about what the patient groups who help form the basis of such registers expect from these tools. Mismatches between patient expectations and the register design may limit the long-term utility of such registers.
This study elicited the views of people with Multiple Sclerosis (PwMS) on the desirability and expectations regarding a UK Register for MS.
Participants were recruited through a range of traditional means (newsletters, adverts, word of mouth), as well as via the Internet, to obtain a broad sample of PwMS. Semi-structured interviews were conducted over the telephone, and the questions asked about: the desirability of the Register; what the participants envisaged the Register actually being used for; and what they hoped the Register could be used for.
The majority of individuals' points postulated that a UK MS Register would be useful, but a range of potential concerns were identified by the sample, such as security, accessibility for all PwMS, and the validity of self-report data. Analysis of the responses revealed a difference between what PwMS thought the Register would be used for, and how they wanted it to be used, particularly in relation to a desired social contact, exchange, and networking function.
The security and accessibility of the website, the validity of the data, and mismatches between the expected and actual uses, are all issues of importance in the development of e-health tools, if PwMS are to be successfully engaged over time.
基于互联网的健康登记系统越来越多地被用于健康促进和医学研究，但对于构成这些登记系统基础的患者群体对这些工具的期望了解甚少。患者的期望与登记系统的设计之间存在差异，可能会限制这些登记系统的长期效用。
本研究旨在了解多发性硬化症患者（PwMS）对英国多发性硬化症登记系统的可取性和期望。
通过多种传统方式（通讯、广告、口碑）以及互联网招募参与者，以获得广泛的 PwMS 样本。通过电话进行半结构化访谈，问题涉及：登记系统的可取性；参与者设想登记系统实际用途；以及他们希望登记系统能用于哪些方面。
大多数人的观点认为英国多发性硬化症登记系统将是有用的，但样本中也提出了一系列潜在的担忧，如安全性、所有 PwMS 都能访问以及自我报告数据的有效性。对回复的分析揭示了 PwMS 认为登记系统将用于哪些方面，以及他们希望如何使用之间的差异，特别是在期望的社交联系、交流和网络功能方面。
如果要让 PwMS 随着时间的推移成功参与进来，网站的安全性和可访问性、数据的有效性以及期望用途和实际用途之间的差异，都是电子健康工具开发中需要重视的问题。
