Exploring Perceptions of Cross-Sectoral Data Sharing with People with Parkinson’s

要旨

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.

受賞
Honorable Mention
著者
Roisin McNaney
Monash University, Melbourne, Australia
Catherine Morgan
University of Bristol, Bristol, United Kingdom
Pranav Kulkarni
Monash University, Melbourne, VIC, Australia
Julio Vega
University of Pittsburgh, Pittsburgh, Pennsylvania, United States
Farnoosh Heidarivincheh
University of Bristol, Bristol, United Kingdom
Ryan McConville
University of Bristol, Bristol, United Kingdom
Alan Whone
University of Bristol, Bristol, United Kingdom
Mickey Kim
University of Bristol, Bristol, United Kingdom
Reuben Kirkham
Monash University, Melbourne, Australia
Ian Craddock
University of Bristol, Bristol, United Kingdom
論文URL

https://dl.acm.org/doi/abs/10.1145/3491102.3501984

動画

会議: CHI 2022

The ACM CHI Conference on Human Factors in Computing Systems (https://chi2022.acm.org/)

セッション: Health Informatics and Visualization

297
4 件の発表
2022-05-02 23:15:00
2022-05-03 00:30:00