Perspectives on Data Sharing in Persons With Spinal Cord Injury

Freda M. Warner; Bobo Tong; Jessie McDougall; Kathleen A. Martin Ginis; Alexander G. Rabchevsky; Jacquelyn J. Cragg; John L.K. Kramer

doi:10.1089/neur.2023.0035

Perspectives on Data Sharing in Persons With Spinal Cord Injury

Freda M. Warner
, Bobo Tong
, Jessie McDougall
, Kathleen A. Martin Ginis
, Alexander G. Rabchevsky
, Jacquelyn J. Cragg
, John L.K. Kramer

Research output: Contribution to journal › Article › peer-review

3 Scopus citations

Abstract

Open data sharing of clinical research aims to improve transparency and support novel scientific discoveries. There are also risks, including participant identification and the potential for stigmatization. The perspectives of persons participating in research are needed to inform open data-sharing policies. The aim of the current study was to determine perspectives on data sharing in persons with spinal cord injury (SCI), including risks and benefits, and types of data people are most willing to share. A secondary aim was to examine predictors of willingness to share data. Persons with SCIs in the United States and Canada completed a survey developed and disseminated through various channels, including our community partner, the North American Spinal Cord Injury Consortium. The study collected data from 232 participants, with 52.2% from Canada and 42.2% from the United States, and the majority completed the survey in English. Most participants had previously participated in research and had been living with an SCI for ‡5 years. Overall, most participants reported that the potential benefits of data sharing outweighed the negatives, with persons with SCI seen as the most trustworthy partners for data sharing. The highest levels of concern were that information could be stolen and companies might use the information for marketing purposes. Persons with SCI were generally supportive of data sharing for research purposes. Clinical trials should consider including a statement on open data sharing in informed consents to better acknowledge the contribution of research participants in future studies.

Original language	English
Pages (from-to)	781-789
Number of pages	9
Journal	Neurotrauma Reports
Volume	4
Issue number	1
DOIs	https://doi.org/10.1089/neur.2023.0035
State	Published - Nov 1 2023

Bibliographical note

Publisher Copyright:
© 2023 Liebert. All Rights Reserved.

Funding

This work was supported by the Craig H. Neilsen Foundation (Grant #: 640091) and the Rick Hansen Foundation. J.C. holds the Tier 2 Canada Research Chair in Open Data Science and a Michael Smith Health Research BC Scholar Award. We express our sincere gratitude to the NASCIC for their invaluable assistance with developing the survey, participant recruitment, and interpretation of the data. Additionally, we extend a special thanks to Jen French and Ian Burkhart for their generous help in revising the manuscript. Their insightful feedback and suggestions were instrumental in shaping the final version of this work. Without NASCIC’s support and expertise, this study would not have been possible.

Funders	Funder number
NASCIC
Craig H. Neilsen Foundation	640091
Rick Hansen Foundation

Keywords

data privacy
data sharing
informed consent
open science
spinal cord injury

ASJC Scopus subject areas

Developmental Neuroscience
Cellular and Molecular Neuroscience

Access to Document

10.1089/neur.2023.0035

Cite this

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title = "Perspectives on Data Sharing in Persons With Spinal Cord Injury",

abstract = "Open data sharing of clinical research aims to improve transparency and support novel scientific discoveries. There are also risks, including participant identification and the potential for stigmatization. The perspectives of persons participating in research are needed to inform open data-sharing policies. The aim of the current study was to determine perspectives on data sharing in persons with spinal cord injury (SCI), including risks and benefits, and types of data people are most willing to share. A secondary aim was to examine predictors of willingness to share data. Persons with SCIs in the United States and Canada completed a survey developed and disseminated through various channels, including our community partner, the North American Spinal Cord Injury Consortium. The study collected data from 232 participants, with 52.2\% from Canada and 42.2\% from the United States, and the majority completed the survey in English. Most participants had previously participated in research and had been living with an SCI for ‡5 years. Overall, most participants reported that the potential benefits of data sharing outweighed the negatives, with persons with SCI seen as the most trustworthy partners for data sharing. The highest levels of concern were that information could be stolen and companies might use the information for marketing purposes. Persons with SCI were generally supportive of data sharing for research purposes. Clinical trials should consider including a statement on open data sharing in informed consents to better acknowledge the contribution of research participants in future studies.",

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Perspectives on Data Sharing in Persons With Spinal Cord Injury

Abstract

Bibliographical note

Funding

Keywords

ASJC Scopus subject areas

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