Designing for Participatory Data Governance: Insights from People with Parkinson’s

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Abstract

In today’s age of data-driven healthcare, the growing utilization of health data to inform critical aspects of patient care and medical research places an ever increasing signifcance on its governance. This study aims to explore the perspectives of individuals living with Parkinson’s Disease regarding their needs and preferences in relation to data governance. We frst conducted a survey (n=52) to explore the types of data people with Parkinson’s generate through their self-care practices, and then conducted 3 workshops with 9 participants to understand their perspectives on the governance of this type of data. Through this work, we highlight the factors that motivate them to collect self-care data, and present their requirements for its governance, which could inform the design of future infrastructure to support these needs. We also showcase how speculative approaches can be used to engage communities in discussions around data collection and governance.

Original languageEnglish
Title of host publicationProceedings of the 2024 ACM Designing Interactive Systems Conference
EditorsJonas Fritsch, Sarah Fdili Alaoui, Christopher A. Le Dantec
Place of PublicationNew York NY USA
PublisherAssociation for Computing Machinery (ACM)
Pages541-555
Number of pages15
ISBN (Electronic)9798400705830
DOIs
Publication statusPublished - 2024
EventDesigning Interactive Systems 2024 - Copenhagen, Denmark
Duration: 1 Jul 20245 Jul 2024
https://dis.acm.org/2024/ (Website)
https://dl.acm.org/doi/proceedings/10.1145/3643834 (Proceedings)
https://dl.acm.org/doi/proceedings/10.1145/3656156 (Proceedings)

Conference

ConferenceDesigning Interactive Systems 2024
Abbreviated titleDIS 2024
Country/TerritoryDenmark
CityCopenhagen
Period1/07/245/07/24
Internet address

Keywords

  • Data governance
  • Parkinson’s
  • Self-tracking
  • Speculative design

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