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

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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.