Data Stewardship in Clinical Computer Security: Balancing Benefit and Burden in Participatory Systems

Abstract

The mass collection and reuse of social data requires a reimagining of privacy and consent, with particular attention to the (in)equitable distribution of benefits and burdens between researchers and subjects. Instrumenting frontline clinical services to collect and steward data might mitigate the exploitation inherent to data collection---with attention to how subjects can meaningfully participate in stewardship. We explore participatory data stewardship in the context of clinical computer security for survivors of intimate partner violence (IPV). Via semi-structured interviews with IPV support workers, we explore how data are produced within the IPV care ecosystem at the Clinic to End Tech Abuse (CETA). We then conduct design provocations with clients of IPV services and their support workers, exploring possibilities for participatory data mechanisms like open records and dynamic consent. We find participation in data stewardship may benefit clients through improved agency, self-reflection, and control of self-narrative, and that incurred burdens may be alleviated by enlisting trusted stewards. We close with future work for CSCW interrogating how knowledge of digital-safety harms can and should be produced from clinical encounters, towards more equitable ways of knowing.