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

doi:10.1145/3491102.3501984

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

Department of Human Centred Computing

Research output: Chapter in Book/Report/Conference proceeding › Conference Paper › Research › peer-review

9 Citations (Scopus)

Abstract

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 language	English
Title of host publication	Proceedings of the 2022 CHI Conference on Human Factors in Computing Systems
Editors	Steven Drucker, Julie Williamson, Koji Yatani
Place of Publication	New York NY USA
Publisher	Association for Computing Machinery (ACM)
Number of pages	14
ISBN (Electronic)	9781450391573
DOIs	https://doi.org/10.1145/3491102.3501984
Publication status	Published - Apr 2022
Event	International Conference on Human Factors in Computing Systems 2022 - New Orleans, United States of America Duration: 29 Apr 2022 → 5 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)

Conference

Conference	International Conference on Human Factors in Computing Systems 2022
Abbreviated title	CHI 2022
Country/Territory	United States of America
City	New Orleans
Period	29/04/22 → 5/05/22
Internet address	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)

Keywords

Data sharing
IoT
Parkinson's
Privacy and security
Smart home

Access to Document

10.1145/3491102.3501984

407004223-oaFinal published version, 575 KB

Cite this

McNaney, R., Morgan, C., Kulkarni, P., Vega, J., Heidarivincheh, F., McConville, R., Whone, A., Kim, M., Kirkham, R., & Craddock, I. (2022). Exploring perceptions of cross-sectoral data sharing with people with Parkinson's. In S. Drucker, J. Williamson, & K. Yatani (Eds.), Proceedings of the 2022 CHI Conference on Human Factors in Computing Systems Article 280 Association for Computing Machinery (ACM). https://doi.org/10.1145/3491102.3501984

@inproceedings{bbae467d2c154b73a831e03650ba3ab9,

title = "Exploring perceptions of cross-sectoral data sharing with people with Parkinson's",

abstract = "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.",

keywords = "Data sharing, IoT, Parkinson's, Privacy and security, Smart home",

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

note = "Funding Information: This work was performed under the SPHERE Next Steps Project funded by the UK Engineering and Physical Sciences Research Council (EPSRC), Grant EP/R005273/1. This work is supported by the Elizabeth Blackwell Institute for Health Research, University of Bristol and the Wellcome Trust Institutional Strategic Support Fund, grant code: 204813/Z/16/Z, by The Cure Parkinson{\textquoteright}s Trust, grant code AW021 and by IXICO, grant code R101507-101. Dr Jonathan de Pass and Mrs Georgina de Pass made a charitable donation to the University of Bristol (of which Jonathan is a graduate) through the Development and Alumni Relations Office to support research into Parkinson{\textquoteright}s Disease. The funding pays for the salary of Catherine Morgan, PhD student and Clinical Research Fellow, and she reports to the donors on her progress. We gratefully acknowledge the study participants for their time and efforts in participating in this research. We also acknowledge the local Parkinson{\textquoteright}s and Other Movement Disorders Health Integration Team (Patient and Public Involvement Group) for their assistance at each step of study design. This work was facilitated by the dedication of our colleagues who were involved in study implementation including but not limited to Emma Tonkin, Julia Carey, David Bailey, Daniella Hale, Antonis Vafeas, Gregory Tourte, George Oikonomou, Sam Whitehouse. Publisher Copyright: {\textcopyright} 2022 ACM.; International Conference on Human Factors in Computing Systems 2022, CHI 2022 ; Conference date: 29-04-2022 Through 05-05-2022",

year = "2022",

month = apr,

doi = "10.1145/3491102.3501984",

language = "English",

editor = "Steven Drucker and Julie Williamson and Koji Yatani",

booktitle = "Proceedings of the 2022 CHI Conference on Human Factors in Computing Systems",

publisher = "Association for Computing Machinery (ACM)",

address = "United States of America",

url = "https://dl.acm.org/doi/proceedings/10.1145/3491102, https://chi2022.acm.org/, https://dl.acm.org/doi/proceedings/10.1145/3491101",

}

McNaney, R, Morgan, C, Kulkarni, P, Vega, J, Heidarivincheh, F, McConville, R, Whone, A, Kim, M, Kirkham, R & Craddock, I 2022, Exploring perceptions of cross-sectoral data sharing with people with Parkinson's. in S Drucker, J Williamson & K Yatani (eds), Proceedings of the 2022 CHI Conference on Human Factors in Computing Systems., 280, Association for Computing Machinery (ACM), New York NY USA, International Conference on Human Factors in Computing Systems 2022, New Orleans, Louisiana, United States of America, 29/04/22. https://doi.org/10.1145/3491102.3501984

Exploring perceptions of cross-sectoral data sharing with people with Parkinson's. / McNaney, Roisin; Morgan, Catherine; Kulkarni, Pranav et al.
Proceedings of the 2022 CHI Conference on Human Factors in Computing Systems. ed. / Steven Drucker; Julie Williamson; Koji Yatani. New York NY USA: Association for Computing Machinery (ACM), 2022. 280.

Research output: Chapter in Book/Report/Conference proceeding › Conference Paper › Research › peer-review

TY - GEN

T1 - Exploring perceptions of cross-sectoral data sharing with people with Parkinson's

AU - McNaney, Roisin

AU - Morgan, Catherine

AU - Kulkarni, Pranav

AU - Vega, Julio

AU - Heidarivincheh, Farnoosh

AU - McConville, Ryan

AU - Whone, Alan

AU - Kim, Mickey

AU - Kirkham, Reuben

AU - Craddock, Ian

N1 - Conference code: 40th

PY - 2022/4

Y1 - 2022/4

N2 - 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.

AB - 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.

KW - Data sharing

KW - IoT

KW - Parkinson's

KW - Privacy and security

KW - Smart home

UR - http://www.scopus.com/inward/record.url?scp=85130512912&partnerID=8YFLogxK

U2 - 10.1145/3491102.3501984

DO - 10.1145/3491102.3501984

M3 - Conference Paper

AN - SCOPUS:85130512912

BT - Proceedings of the 2022 CHI Conference on Human Factors in Computing Systems

A2 - Drucker, Steven

A2 - Williamson, Julie

A2 - Yatani, Koji

PB - Association for Computing Machinery (ACM)

CY - New York NY USA

T2 - International Conference on Human Factors in Computing Systems 2022

Y2 - 29 April 2022 through 5 May 2022

ER -

McNaney R, Morgan C, Kulkarni P, Vega J, Heidarivincheh F, McConville R et al. Exploring perceptions of cross-sectoral data sharing with people with Parkinson's. In Drucker S, Williamson J, Yatani K, editors, Proceedings of the 2022 CHI Conference on Human Factors in Computing Systems. New York NY USA: Association for Computing Machinery (ACM). 2022. 280 doi: 10.1145/3491102.3501984

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

Abstract

Conference

Keywords

Access to Document

Other files and links

Cite this