Exploring perceptions of cross-sectoral data sharing with people with Parkinson's

Roisin McNaney, Catherine Morgan, Pranav Kulkarni, Julio Vega, Farnoosh Heidarivincheh, Ryan McConville, Alan Whone, Mickey Kim, Reuben Kirkham, Ian Craddock

Research output: Chapter in Book/Report/Conference proceedingConference PaperResearchpeer-review

7 Citations (Scopus)


In interdisciplinary spaces such as digital health, datasets that are complex to collect, require specialist facilities, and/or are collected with specific populations have value in a range of different sectors. In this study we collected a simulated free-living dataset, in a smart home, with 12 participants (six people with Parkinson's, six carers). We explored their initial perceptions of the sensors through interviews and then conducted two data exploration workshops, wherein we showed participants the collected data and discussed their views on how this data, and other data relating to their Parkinson's symptoms, might be shared across different sectors. We provide recommendations around how participants might be better engaged in considering data sharing in the early stages of research, and guidance for how research might be configured to allow for more informed data sharing practices in the future.

Original languageEnglish
Title of host publicationProceedings of the 2022 CHI Conference on Human Factors in Computing Systems
EditorsSteven Drucker, Julie Williamson, Koji Yatani
Place of PublicationNew York NY USA
PublisherAssociation for Computing Machinery (ACM)
Number of pages14
ISBN (Electronic)9781450391573
Publication statusPublished - Apr 2022
EventInternational Conference on Human Factors in Computing Systems 2022 - New Orleans, United States of America
Duration: 29 Apr 20225 May 2022
Conference number: 40th
https://dl.acm.org/doi/proceedings/10.1145/3491102 (ACM Digital Library - proceedings)
https://chi2022.acm.org/ (Website)
https://dl.acm.org/doi/proceedings/10.1145/3491101 (Extended Abstracts)


ConferenceInternational Conference on Human Factors in Computing Systems 2022
Abbreviated titleCHI 2022
Country/TerritoryUnited States of America
CityNew Orleans
Internet address


  • Data sharing
  • IoT
  • Parkinson's
  • Privacy and security
  • Smart home

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