Abstract

Objective

Diane Forsythe and other feminist scholars have long shown how system builders’ tacit assumptions lead to the systematic erasure of certain users from the design process. In spite of this phenomena being known in the health informatics literature for decades, recent research shows how patient portals and electronic patients health records continue to reproduce health inequalities in Western societies. To better understand this discrepancy between scholarly awareness of such inequities and mainstream design, this study unravels the (conceptual) assumptions and practices of designers and others responsible for portal implementation in the Netherlands and how citizens living in vulnerable circumstances are included in this process.

Materials and methods

We conducted semistructured interviews (n = 24) and questionnaires (n = 14) with portal designers, health professionals, and policy advisors.

Results

In daily design practices, equity is seen as an “end-of-the-pipeline” concern. Respondents identify health care professionals rather than patients as their main users. If patients are included in the design, this generally entails patients in privileged positions. The needs of citizens living in vulnerable circumstances are not prioritized in design processes. Developers legitimize their focus with reference to the innovation-theoretical approach of the Diffusion of Innovations.

Discussion and conclusion

Although feminist scholars have developed important understandings of the exclusion of citizens living in vulnerable circumstances from portal design, other academic efforts have profoundly shaped daily practices of portal development. Diane Forsythe would likely have taken up this discrepancy as a challenge by finding ways to translate these insights into mainstream systems design.

中文翻译：

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持续为用户提供不平等的患者门户设计和实施

摘要

客观的

戴安娜·福赛斯（Diane Forsythe）和其他女权主义学者长期以来一直在展示系统构建者的默认假设如何导致从设计过程中系统擦除某些用户。尽管这种现象在健康信息学文献中已有数十年的历史，但最近的研究表明，患者门户和电子患者的健康记录如何继续再现西方社会中的健康不平等现象。为了更好地理解学者们对这种不平等现象的认识与主流设计之间的差异，本研究揭露了荷兰以及负责门户网站实施的其他人员的（概念）假设和实践，以及生活在脆弱环境中的公民如何纳入这一过程。

材料和方法

我们与门户网站设计师，卫生专业人员和政策顾问进行了半结构化访谈（n = 24）和问卷（n = 14）。

结果

在日常设计实践中，公平被视为“管道末端”问题。受访者确定医疗保健专业人员而非患者是他们的主要用户。如果将患者包括在设计中，则通常需要将患者置于特权位置。在设计过程中没有优先考虑生活在脆弱环境中的公民的需求。开发人员通过参考“创新扩散”的创新理论方法使他们的关注合法化。

讨论与结论

尽管女权主义学者对门户网站设计中排斥生活环境脆弱的公民有了重要的了解，但其他学术努力却深刻影响了门户网站开发的日常实践。黛安·福赛斯（Diane Forsythe）可能会通过寻找将这些见解转化为主流系统设计的方法来解决这一挑战。