School for the Future of Innovation in Society, Arizona State University, PO Box 875603, Tempe, AZ, 85287-5603, USA.
Department of Computer Science and Engineering, University of California San Diego, 9500 Gilman Dr #0404, La Jolla, CA, 92093, USA.
Sci Eng Ethics. 2020 Feb;26(1):183-203. doi: 10.1007/s11948-019-00086-3. Epub 2019 Feb 6.
Mobile health (mHealth) research involving pervasive sensors, mobile apps and other novel data collection tools and methods present new ethical, legal, and social challenges specific to informed consent, data management and bystander rights. To address these challenges, a participatory design approach was deployed whereby stakeholders contributed to the development of a web-based commons to support the mHealth research community including researchers and ethics board members. The CORE (Connected and Open Research Ethics) platform now features a community forum, a resource library and a network of nearly 600 global members. The utility of the participatory design process was evaluated by analyzing activities carried out over an 8-month design phase consisting of 86 distinct events including iterative design deliberations and social media engagement. This article describes how participatory design yielded 55 new features directly mapped to community needs and discusses relationships to user engagement as demonstrated by a steady increase in CORE member activity and followers on Twitter.
移动健康（mHealth）研究涉及普遍存在的传感器、移动应用程序和其他新颖的数据收集工具和方法，带来了新的伦理、法律和社会挑战，特别是在知情同意、数据管理和旁观者权利方面。为了解决这些挑战，采用了参与式设计方法，让利益相关者为开发一个支持移动健康研究社区的基于网络的公共资源做出贡献，包括研究人员和伦理委员会成员。CORE（连接和开放研究伦理）平台现在具有一个社区论坛、一个资源库和一个由近 600 名全球成员组成的网络。通过分析为期 8 个月的设计阶段中进行的 86 项不同活动，包括迭代设计审议和社交媒体参与，评估了参与式设计过程的效用。本文描述了参与式设计如何产生 55 个直接映射到社区需求的新功能，并讨论了与用户参与的关系，这表现在 CORE 成员活动和 Twitter 关注者的稳步增加上。
