CAREER: Digital Hospice: Human-Centered Design for Personal Accounts and Data at the End of Life

这项研究将全面研究在线账户和数据的死后需求；制定临终规划实践、指南和系统；并制定一个框架，描述技术设计中死前规划和死后经验之间的关系。社交媒体和其他在线信息服务的设计者几乎没有关于如何创建考虑用户不可避免死亡的系统的指导。同样，当涉及到生命结束规划时，用户几乎没有关于技术的指导。根据临终关怀的原则，该项目旨在支持对在线账户和数据进行临终规划，并设计支持死后数据管理的系统。该项目将产生成果以确保这一愿景，包括：(1)设计一个可供公众采用的临终规划的变革性框架；(2)制定设计准则，帮助技术人员考虑死亡率带来的细微差别；(3)推出和运营一个数字化临终诊所，帮助教育公众有关临终规划的技术；以及(4)通过以人为中心的研究和课程活动吸引学生参与，学习和设计与临终和尸检数据相关的技术。该项目将与绝症患者和学生运营的数字临终诊所进行纵向的定性和设计研究，为公众服务：(1)经验地确定死亡对用户和设计者构成的挑战；(2)制定和验证与尊重人的尊严的在线账户和数据相关的临终规划战略，同时解决技术设计的挑战和限制；以及(3)通过课程内容将研究与教育联系起来，扩大学生对以人为中心的计算中什么是“人”的理解。此外，这项研究将侧重于协作，确定临终规划涉及的协调的具体性质--例如，利益攸关方之间的授权(其中一些可能在死前不为人所知)、长时间的互动以及计划生效后无法继续进行协调。总而言之，这项工作将产生理论见解，通过开发解决死前和死后交互之间相互依赖的生命结束设计框架，以及确定以用户为中心的基本限制和开发用户缺席时设计系统的框架，来扩展以人为中心的设计的最新水平。该奖项反映了NSF的法定使命，并通过使用基金会的智力优势和更广泛的影响审查标准进行评估，被认为值得支持。

This research will holistically study the post-mortem needs of online accounts and data; develop end-of-life planning practices, guidelines, and systems; and develop a framework describing the relationships between pre-mortem planning and post-mortem experiences in technology design. Designers of social media and other online information services have little guidance on how to create systems that consider their users' inevitable deaths. Likewise, users have little guidance surrounding technology when it comes to end-of-life planning. Drawing from the principles of hospice care, this project aims to support end-of-life planning for online accounts and data and the design of systems that support post-mortem data management. This project will produce outcomes to ensure this vision, including: (1) designing a transformative framework for end-of-life planning that can be adopted by the public; (2) developing design guidelines that will aid technologists with the nuanced considerations that mortality presents; (3) launching and running a digital end-of-life clinic to help educate the public about end-of-life planning for technology; and (4) engaging students through research and curricular activities focused on human-centered approaches to studying and designing technology related to the end-of-life and post-mortem data.This project will engage in longitudinal qualitative and design research with terminally ill patients and a student run digital end-of-life clinic serving the public to: (1) empirically identify challenges that death presents for users and designers; (2) develop and validate strategies for end-of-life planning related to online accounts and data that honor human dignity while addressing the challenges and constraints of technology design; and (3) connect research and education through curricular content that broadens students' understanding of what counts as "human" in human-centered computing. Additionally, this research will focus on collaboration, identifying the specific properties of coordination that end-of-life planning involves - for example, delegation between stakeholders (some of which may not be known pre-mortem), interaction across long periods of time, and the inability to continue coordination post-mortem when plans go into effect. Together, this work will lead to theoretical insights that extend the state-of-the-art in human-centered design by developing frameworks for end-of-life design that address interdependencies between pre- and post-mortem interactions, as well as identifying fundamental limits to user-centeredness and developing frameworks for designing systems in a user's absence.This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.