DEATH & DATA

Wendy MoncurEPSRC Post-doctoral Research Fellow, University of DundeeVisiting Fellow, Centre for Death & Society, University of Bath

Death & Data

Problem area Planned research Impact Early Findings Summary Questions

Internet usage is increasing exponentially across all age groups.

Users are storing data with personal, intellectual and financial significance online.

Problem area

Problem area, Planned research, Impact, Early Findings, Summary.

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.

“...technologies are not yet designed to ... acknowledge or engage with the inevitable death of their user.” Massimi, et al. 2009

Problem area

Problem area, Planned research, Impact, Early Findings, Summary.

“... instructions for retrieving data after a person dies are ... (at worst) nonexistent...” Farwell, 2007

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.

Industry collaborators

Problem area, Planned research, Impact, Early Findings, Summary.

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

Academic collaborators

Problem area, Planned research, Impact, Early Findings, Summary.

Planned research

Research addresses three key aspects of problem area:1. Bequest2. Inheritance3. Repurposing

Problem area, Planned research, Impact, Early Findings, Summary.

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

Research approach

Problem area, Planned research, Impact, Early Findings, Summary.

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.

Bequeathing data: Example

Problem area, Planned research, Impact, Early Findings, Summary.

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.

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.

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.

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.

Online memorialisation Legitimate mechanism to

support grieving But no rules about

acceptability or ownership E.g - Malicious posts on memorial

sites

Repurposing data: Problem

Problem area, Planned research, Impact, Early Findings, Summary.

Acceptable?

Repurposing data: Example

Problem area, Planned research, Impact, Early Findings, Summary.

Acceptable?

Repurposing data: Example

Problem area, Planned research, Impact, Early Findings, Summary.

Development of a model for repurposing digital artefacts for memorialisation Ownership Use Guided by social acceptability

Repurposing data: Research Objective

Problem area, Planned research, Impact, Early Findings, Summary.

Impact

Easy-to-use mechanism to bequeath digital artefacts

Streamlined process for inheritance

Individuals Technology sectorUK Organisations

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.

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 understood1. Commercial solutions to bequeathing data flawed2. Physical & virtual death may not be simultaneous3. Data may be repurposed in unexpected ways

Problem area, Planned research, Impact, Early Findings, Summary.

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, Planned research, Impact, Early Findings, Summary.

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, Planned research, Impact, Early Findings, Summary.

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, Planned research, Impact, Early Findings, Summary.

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, Planned research, Impact, Early Findings, Summary.

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, Planned research, Impact, Early Findings, Summary.

QUESTIONS?

Wendy MoncurEPSRC Post-doctoral Research Fellow, University of DundeeVisiting Fellow, Centre for Death & Society, University of Bath