katie shilton, "participatory personal data"
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PARTICIPATORY PERSONAL DATAMEDIATED PARTICIPATION & SOCIAL CONCERNS
2012 Summer Social WebshopKatie ShiltonAssistant ProfessorUniversity of Maryland
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Participation With Data
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Example: Boyle Heights Community Development
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Example: Mobile HealthData collection for participant self-care, clinical care, & research
http://openmhealth.org/
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Social Concerns
As an Environmental Protection Agency (EPA) employee put it:
…[Participatory sensing] is either terrifying or electrifying, depending on who does it and how the data are
processed….
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Surveillance or participation?What differentiates participation with data &
surveillance?
• Making decisions about when, how to collect (consent)
• Accessing data and controlling its flow (privacy)
• Preventing powerful corporations or law enforcement from using it against you (equity)
• Being able to have a clean slate (forgetting)
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Values in Design
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Study: Designing for ValuesEthnography, action research at the Center for Embedded Networked Sensing (CENS)
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Qualitative study of designParticipant observation InterviewsDocument analysis
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Findings: Values LeversActivities that build consensus around social values as design criteria
• Some levers are activities already present within design;
• Others introduced to design by leaders, advocates.
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Inherent Values Levers
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Experiencing Internal TestingGrad student G: If I’m going somewhere and I don’t want anyone to know, I think: I need to turn off this application, or leave my cell phone…
Grad student L: I did data collection for T., like for a week or something. Then I felt like, not privacy ... but I felt that I wanted to go out more actively. I felt like: oh, they are watching me, I need to be more active.
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Introduced Values Levers
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Leader AdvocacyAdvocacy during discussions, setting project directions, etc
But also procedures• Participatory sensing data collection form• Administrative support
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Fitting Values Into Design
Agree on Values
• Privacy• Consent• Equity• Forgetting
Operationalize Design Principles• Local control• Legibility• Long-term
engagement• Parsimony
Operationalize Tech Features
• Architecture• UI design• Affordances• Data
retention procedures
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Values-Based Solutions: Personal Data VaultsSecure storage: like a bank account for data
Prototypes built at CENS; Stanford; AT&T Labs
Commercial products emerging (e.g. Personal.com)
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Values-Based Solutions: PolicyNeed for regulation in mobile data ecosystem
• No legislation protects this data – even health data!
Need to protect data vaults
Protection can encourage participation
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Future Work: The Mobile Data Ecosystem
Ecosystem study of start-ups, telecoms, regulators, users
Focus on privacy as a lever in decision-making.• When does it hinder design and policy?• When does it inspire new creativity?
Better understanding users• Survey of privacy concerns in context• Study of participation motivations & practices, values &
concerns
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TakeawaysBig questions at the intersection of:
• technological trajectories (mobile data collection) • social change (values, ethics, justice)
We need to understand:• how these techs affect users, institutions• how to design socially just technologies
And we can be part of design• Professional ethics, research ethics = values tradition• Defining and operationalizing values = a skill set for
design