论文标题
通过系统的指导来展开价值：为以患者为导向的数据捐赠进行价值以价值的参与式研讨会
Unfolding Values through Systematic Guidance: Conducting a Value-Centered Participatory Workshop for a Patient-Oriented Data Donation
论文作者
论文摘要
经常收集的临床患者数据为数据驱动的医疗创新提供了宝贵的资源。这种用于医学研究目的的二次数据使用取决于患者的同意。为了了解患者在医疗数据捐赠方面的价值和需求，我们开发了一种参与式研讨会方法，从价值敏感和反思性设计中整合了方法，以探索患者的价值，并将其转化为假设的理想设计解决方案。在研讨会上收集的数据用于得出针对患者的数据捐赠技术的可行设计要求。在本文中，我们介绍了研讨会流程并评估其应用。
Routinely collected clinical patient data posits a valuable resource for data-driven medical innovation. Such secondary data use for medical research purposes is dependent on the patient's consent. To gain an understanding of the patients' values and needs regarding medical data donations, we developed a participatory workshop method, integrating approaches from value-sensitive and reflective design to explore patients' values and translate them into hypothetical, ideal design solutions. The data gathered in the workshop are used to derive practicable design requirements for patient-oriented data donation technologies. In this paper, we introduce the workshop process and evaluate its application.
