Data sharing in cancer research: A qualitative study exploring community members' preferences

Article

Johnston, Elizabeth A., Bourdaniotis, Xanthia E., Ayre, Susannah K., Zajdlewicz, Leah, Beesle, Vanessa L. and Goodwin, Belinda C.. 2024. "Data sharing in cancer research: A qualitative study exploring community members' preferences." Cancer Medicine. 13 (15). https://doi.org/10.1002/cam4.70084
Article Title

Data sharing in cancer research: A qualitative study exploring community members' preferences

ERA Journal ID200261
Article CategoryArticle
AuthorsJohnston, Elizabeth A., Bourdaniotis, Xanthia E., Ayre, Susannah K., Zajdlewicz, Leah, Beesle, Vanessa L. and Goodwin, Belinda C.
Journal TitleCancer Medicine
Journal Citation13 (15)
Article Numbere70084
Number of Pages12
Year2024
PublisherJohn Wiley & Sons
Place of PublicationUnited Kingdom
ISSN2045-7634
Digital Object Identifier (DOI)https://doi.org/10.1002/cam4.70084
Web Address (URL)https://onlinelibrary.wiley.com/doi/10.1002/cam4.70084
Abstract

Background
Advancements in cancer treatment and survivorship rely on participation in research and access to health records.

Methods
This study explored preferences for data access and sharing in 14 workshops with 42 community members, most of whom were a cancer survivor or carer. Various scenarios for data access and sharing were presented and discussed, with participants' preferences summarized using descriptive statistics. Reasons underlying these preferences were identified through a thematic analysis of workshop transcripts.

Results
Most participants indicated a willingness for researchers to use their self-report data and current health records for a specific research project (86%). Many were also willing for their self-report data and current (62%) or all future (44%) health records to be shared with other researchers for use in other studies if made aware of this. Willingness to consent to data access and sharing data in cancer research was influenced by: (i) the potential for data sharing to advance medical discoveries and benefit people impacted by cancer in the future, (ii) transparency around researchers' credibility and their intentions for data sharing, (iii) level of ownership and control over data sharing, and (iv) protocols for privacy and confidentiality in data sharing.

Conclusions
Based on these themes, we present practical strategies for optimizing data access and sharing in cancer research.

Keywordsclinical cancer research
Contains Sensitive ContentDoes not contain sensitive content
ANZSRC Field of Research 20204299. Other health sciences
Byline AffiliationsCancer Council Queensland, Australia
Queensland University of Technology
QIMR Berghofer Medical Research Institute, Australia
University of Queensland
Centre for Health Research
University of Melbourne
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Browne, Matthew, Langham, Erika, Rockloff, Matthew J., Li, En, Donaldson, Phillip and Goodwin, Belinda. 2015. "EGM jackpots and player behaviour: an in-venue shadowing study." Journal of Gambling Studies. 31 (4), pp. 1695-1714. https://doi.org/10.1007/s10899-014-9485-y
Rash impulsivity predicts lower anticipated pleasure response and a preference for the supernormal
Goodwin, Belinda C., Browne, Matthew, Rockloff, Matthew and Loxton, Natalie J.. 2016. "Rash impulsivity predicts lower anticipated pleasure response and a preference for the supernormal." Personality and Individual Differences. 94, pp. 206-210. https://doi.org/10.1016/j.paid.2016.01.030
Differential effects of reward drive and rash impulsivity on the consumption of a range of hedonic stimuli
Goodwin, Belinda C., Browne, Matthew, Rockloff, Matthew and Loxton, Natalie. 2016. "Differential effects of reward drive and rash impulsivity on the consumption of a range of hedonic stimuli ." Journal of Behavioral Addictions. 5 (2), pp. 192-203. https://doi.org/10.1556/2006.5.2016.047
Do gamblers eat more salt? Testing a latent trait model of covariance in consumption
Goodwin, Belinda C., Browne, Matthew, Rockloff, Matthew and Donaldson, Phillip. 2015. "Do gamblers eat more salt? Testing a latent trait model of covariance in consumption." Journal of Behavioural Addictions. 4 (3), pp. 170-180. https://doi.org/10.1556/2006.4.2015.022
Measuring preference for supernormal over natural rewards: a two-dimensional anticipatory pleasure scale
Goodwin, B. C., Browne, M. and Rockloff, M.. 2015. "Measuring preference for supernormal over natural rewards: a two-dimensional anticipatory pleasure scale." Evolutionary Psychology. 13 (4). https://doi.org/10.1177/1474704915613914