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

Roisin McNaney; Catherine A M Morgan; Pranav Kulkarni; Julio Vega; Farnoosh Heidarivincheh; Ryan McConville; Alan L Whone; Mickey Kim; Reuben Kirkham; Ian J Craddock

doi:10.1145/3491102.3501984

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

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

Research output: Chapter in Book/Report/Conference proceeding › Conference Contribution (Conference Proceeding)

21 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	CHI 2022 - Proceedings of the 2022 CHI Conference on Human Factors in Computing Systems
Pages	1-14
Number of pages	14
ISBN (Electronic)	9781450391573
DOIs	https://doi.org/10.1145/3491102.3501984
Publication status	Published - 29 Apr 2022

Publication series

Name	Conference on Human Factors in Computing Systems - Proceedings
ISSN (Print)	2159-6468
ISSN (Electronic)	2159-6468

Bibliographical 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’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’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’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:
© 2022 ACM.

Research Groups and Themes

SPHERE

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10.1145/3491102.3501984

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Cite this

McNaney, R., Morgan, C. A. M., Kulkarni, P., Vega, J., Heidarivincheh, F., McConville, R., Whone, A. L., Kim, M., Kirkham, R., & Craddock, I. J. (2022). Exploring Perceptions of Cross-Sectoral Data Sharing with People with Parkinson's. In CHI 2022 - Proceedings of the 2022 CHI Conference on Human Factors in Computing Systems (pp. 1-14). Article 280 (Conference on Human Factors in Computing Systems - Proceedings). https://doi.org/10.1145/3491102.3501984

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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{\textquoteright}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{\textquoteright}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.",

author = "Roisin McNaney and Morgan, \{Catherine A M\} and Pranav Kulkarni and Julio Vega and Farnoosh Heidarivincheh and Ryan McConville and Whone, \{Alan L\} and Mickey Kim and Reuben Kirkham and Craddock, \{Ian J\}",

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.",

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McNaney, R, Morgan, CAM, Kulkarni, P, Vega, J, Heidarivincheh, F, McConville, R, Whone, AL, Kim, M, Kirkham, R & Craddock, IJ 2022, Exploring Perceptions of Cross-Sectoral Data Sharing with People with Parkinson's. in CHI 2022 - Proceedings of the 2022 CHI Conference on Human Factors in Computing Systems., 280, Conference on Human Factors in Computing Systems - Proceedings, pp. 1-14. https://doi.org/10.1145/3491102.3501984

Exploring Perceptions of Cross-Sectoral Data Sharing with People with Parkinson's. / McNaney, Roisin; Morgan, Catherine A M; Kulkarni, Pranav et al.
CHI 2022 - Proceedings of the 2022 CHI Conference on Human Factors in Computing Systems. 2022. p. 1-14 280 (Conference on Human Factors in Computing Systems - Proceedings).

Research output: Chapter in Book/Report/Conference proceeding › Conference Contribution (Conference Proceeding)

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AU - McNaney, Roisin

AU - Morgan, Catherine A M

AU - Kulkarni, Pranav

AU - Vega, Julio

AU - Heidarivincheh, Farnoosh

AU - McConville, Ryan

AU - Whone, Alan L

AU - Kim, Mickey

AU - Kirkham, Reuben

AU - Craddock, Ian J

N1 - 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’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’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’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: © 2022 ACM.

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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.

U2 - 10.1145/3491102.3501984

DO - 10.1145/3491102.3501984

M3 - Conference Contribution (Conference Proceeding)

T3 - Conference on Human Factors in Computing Systems - Proceedings

SP - 1

EP - 14

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

ER -

McNaney R, Morgan CAM, Kulkarni P, Vega J, Heidarivincheh F, McConville R et al. Exploring Perceptions of Cross-Sectoral Data Sharing with People with Parkinson's. In CHI 2022 - Proceedings of the 2022 CHI Conference on Human Factors in Computing Systems. 2022. p. 1-14. 280. (Conference on Human Factors in Computing Systems - Proceedings). doi: 10.1145/3491102.3501984

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

Abstract

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