Death & data

1. Death & data Wendy Moncur EPSRC Post-doctoral Research Fellow, University of Dundee Visiting Fellow, Centre for Death & Society, University of Bath

2. Death & Data • Problem area • Planned research • Impact • Early Findings • Summary • Questions

3. Problem area • Internet usage is increasing exponentially across all age groups. • Users are storing data with personal, intellectual and financial significance online. Problem area, Planned research, Impact, Early Findings, Summary.

4. Problem area • Data stored online is wide-ranging: • Photos • Blog posts • Emails, text msgs • Video • Audio • Membership of groups/ clubs • Share dealing • … and more… • Where is it stored??? Problem area, Planned research, Impact, Early Findings, Summary.

5. Problem area “...technologies are not yet designed to ... acknowledge or engage with the inevitable death of their user.” Massimi, et al. 2009 “... instructions for retrieving data after a person dies are ... (at worst) nonexistent...” Farwell, 2007 Problem area, Planned research, Impact, Early Findings, Summary.

6. Problem area • But data is valuable.... • To the bereaved • Emotional • Practical • Financial • Intellectual • To others • Work-related data • Disaster victim identification • Fraudulent intent - harvesting Ids Problem area, Planned research, Impact, Early Findings, Summary.

7. Industry collaborators Problem area, Planned research, Impact, Early Findings, Summary.

8. Academic collaborators • School of Computing • User-centred design with challenging populations • Centre for Death & Society • Interdisciplinary study of social aspects of death, dying & bereavement • AHRC Centre in Intellectual & Property Law (SCRIPT) • Intellectual property & ICT LAW • Interaction between law & technology Problem area, Planned research, Impact, Early Findings, Summary.

9. Planned research • Research addresses three key aspects of problem area: • Bequest • Inheritance • Repurposing Problem area, Planned research, Impact, Early Findings, Summary.

10. Research approach • Participatory design, involving: • Those who may face death • E.g. Military personnel, terminally ill, those awaiting organ transplant • The recently bereaved • Also... • Organisations supporting the dying & the bereaved • Funeral directors • Psychologists • Lawyers Problem area, Planned research, Impact, Early Findings, Summary.

11. Bequeathing data: Problem • Tangible assets can be bequeathed. • Data cannot be bequeathed • Password protected • Who owns data? – ‘leakage’ • T&C of ISPs Problem area, Planned research, Impact, Early Findings, Summary.

12. Bequeathing data: Example Problem area, Planned research, Impact, Early Findings, Summary.

13. Bequeathing data: Research objectives • Create generic mechanism for users • Enable users to nominate inheritors of digital artefacts • Define a new thanatosensitive design methodology • Actively incorporate the unavoidable facts of mortality, dying, and death into ICT research and design • A new form of affective computing? Problem area, Planned research, Impact, Early Findings, Summary.

14. Inheriting data: Problem • No established executry process for data • Causes problems for bereaved • What accounts did deceased have? • Password protected accounts • Causes problems for ISPs • Responsibility • Repercussions Problem area, Planned research, Impact, Early Findings, Summary.

15. Inheriting data: Example • L.Cpl.Ellsworth • Killed in action in Iraq • Yahoo! account contained essential personal info • Yahoo! refused access to bereaved parents •  Court Ruling • Yahoo! will now review requests on a case-by-case basis Problem area, Planned research, Impact, Early Findings, Summary.

16. Inheriting data: Research objectives • Identify current practices – good & bad • Create generic online protocol • Facilitate inheritance of personal data when a user dies Problem area, Planned research, Impact, Early Findings, Summary.

17. Repurposing data: Problem • Online memorialisation • Legitimate mechanism to support grieving • But no rules about acceptability or ownership • E.g - Malicious posts on memorial sites Problem area, Planned research, Impact, Early Findings, Summary.

18. Repurposing data: Example • Acceptable? Problem area, Planned research, Impact, Early Findings, Summary.

19. Repurposing data: Example • Acceptable? Problem area, Planned research, Impact, Early Findings, Summary.

20. Repurposing data: Research Objective • Development of a model for repurposing digital artefacts for memorialisation • Ownership • Use • Guided by social acceptability Problem area, Planned research, Impact, Early Findings, Summary.

21. Impact Individuals Technology sector UK Organisations • Easy-to-use mechanism to bequeath digital artefacts • Streamlined process for inheritance • Guidance to support those in advisory capacity • Best-practice guidelines for ISPs • New methodology for ICT researchers • Inform policy makers Problem area, Planned research, Impact, Early Findings, Summary.

22. Early Findings • Current research is fragmented • ICT: Human-Computer Interaction, Security, Disaster Management • Current HCI research focusing on bereavement & memorialisation • Industry often ahead of research • Technology landscape is complex& poorly understood • Commercial solutions to bequeathing data flawed • Physical & virtual death may not be simultaneous • Data may be repurposed in unexpected ways Problem area, Plannedresearch, Impact, Early Findings, Summary.

23. Early Findings (1) • Commercial solutions to bequeathing data • Digital estate services • Majority created > 2006  Longevity?? • Demands high levels of security & user trust • Posthumous emails • Limited evidence of death required • E.g. Deathswitch.com Problem area, Plannedresearch, Impact, Early Findings, Summary.

24. Early Findings (2) • Physical & virtual death not simultaneous • Living on in a virtual world • E.g. Facebook • Going offline at End of Life (EoL) • Barriers to ICT use at EoL include: • Physical/ cognitive decline which generates dynamic accessibility issues • Limited access to technology – e.g. in hospital Problem area, Plannedresearch, Impact, Early Findings, Summary.

25. Early Findings (3) • Many ways in which data may be repurposed post-mortem: • ‘Normal’ death • Funeral • Memorials • Continuing bonds with the dead • ‘Abnormal’ death – e.g. - • Disaster- identification • E.g Facebook site Hotel Montana after Haiti earthquake • Murder – eulogisation • Eg – Raoul Moat Problem area, Plannedresearch, Impact, Early Findings, Summary.

26. Summary(1) • Contextual understanding is vital in gaining design insights • In the last 3 months, I’ve worked with: • Forensic anthropologist • Psychologist • Thanatologist & Death studies expert • Funeral directors • Disaster management expert • Crematorium manager • Religious representatives • Humanist celebrant • Designers • Lawyers • Computer scientists Problem area, Plannedresearch, Impact, Early Findings, Summary.

27. Summary (2) • Users die • Volume of personal data held online growing • Minimal acknowledgement of user death • Digital artefacts retain value after user death • Fellowship research will address basic issues of: • Bequest • Inheritance • Repurposing • BUT • Complex research terrain • Emergent area generates many questions Problem area, Plannedresearch, Impact, Early Findings, Summary.

28. Questions? Wendy Moncur EPSRC Post-doctoral Research Fellow, University of Dundee Visiting Fellow, Centre for Death & Society, University of Bath