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让残疾群体参与信息学研究:基本原理和实际步骤。

Engaging the disability community in informatics research: rationales and practical steps.

机构信息

Department of Public Health Sciences, University of Virginia, Charlottesville, Virginia, USA.

Department of Engineering Systems and Environment, University of Virginia, Charlottesville, Virginia, USA.

出版信息

J Am Med Inform Assoc. 2022 Oct 7;29(11):1989-1995. doi: 10.1093/jamia/ocac136.

Abstract

As the informatics community grows in its ability to address health disparities, there is an opportunity to expand our impact by focusing on the disability community as a health disparity population. Although informaticians have primarily catered design efforts to one disability at a time, digital health technologies can be enhanced by approaching disability from a more holistic framework, simultaneously accounting for multiple forms of disability and the ways disability intersects with other forms of identity. The urgency of moving toward this more holistic approach is grounded in ethical, legal, and design-related rationales. Shaped by our research and advocacy with the disability community, we offer a set of guidelines for effective engagement. We argue that such engagement is critical to creating digital health technologies which more fully meet the needs of all disabled individuals.

摘要

随着信息学社区在解决健康差异方面的能力不断增强,我们有机会通过关注残疾人群体作为健康差异群体来扩大我们的影响力。尽管信息学家主要针对一种残疾设计努力,但通过从更全面的框架来处理残疾问题,同时考虑多种形式的残疾以及残疾与其他形式的身份交叉的方式,数字健康技术可以得到增强。朝着这种更全面的方法发展的紧迫性基于伦理、法律和设计相关的理由。在我们与残疾社区的研究和宣传的推动下,我们提出了一套有效的参与准则。我们认为,这种参与对于创建更充分满足所有残疾人士需求的数字健康技术至关重要。

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