Katie Shilton, "Participatory Personal Data"

PARTICIPATORY PERSONAL DATAMEDIATED PARTICIPATION & SOCIAL CONCERNS

2012 Summer Social WebshopKatie ShiltonAssistant ProfessorUniversity of Maryland

Participation With Data

Example: Boyle Heights Community Development

Example: Mobile HealthData collection for participant self-care, clinical care, & research

http://openmhealth.org/

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….

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)

Values in Design

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

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.

Inherent Values Levers

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

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

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)

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

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

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

Thank [email protected]

Copyright Bill Watterson, 1991