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

Article

Johnston, Elizabeth A., Bourdaniotis, Xanthia E., Ayre, Susannah K., Zajdlewicz, Leah, Beesley, 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, Beesley, 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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Interventions for prostate cancer survivorship: a systematic review of reviews
Crawford-Williams, Fiona, March, Sonja, Goodwin, Belinda C., Ralph, Nicholas, Galvao, Daniel A., Newton, Robert U., Chambers, Suzanne K. and Dunn, Jeff. 2018. "Interventions for prostate cancer survivorship: a systematic review of reviews." Psycho-Oncology: journal of the psychological, social and behavioral dimensions of cancer. 27 (10), pp. 2339-2348. https://doi.org/10.1002/pon.4888
Geographical Variations in the Clinical Management of Colorectal Cancer in Australia: A Systematic Review
Crawford-Williams, Fiona, March, Sonja, Ireland, Michael J., Rowe, Arlen, Goodwin, Belinda, Hyde, Melissa K., Chambers, Suzanne K., Aitken, Joanne F. and Dunn, Jeff. 2018. "Geographical Variations in the Clinical Management of Colorectal Cancer in Australia: A Systematic Review." Frontiers in Oncology. 8, pp. 1-10. https://doi.org/10.3389/fonc.2018.00116
Cancer care in regional Australia from the health professional's perspective
Crawford-Williams, Fiona, Goodwin, Belinda, March, Sonja, Ireland, Michael J., Hyde, Melissa K., Chambers, Suzanne K., Aitken, Joanne F. and Dunn, Jeff. 2018. "Cancer care in regional Australia from the health professional's perspective." Supportive Care in Cancer. 26 (10), pp. 3507-3515. https://doi.org/10.1007/s00520-018-4218-x
Socio-demographic factors drive regional differences in participation in the National Bowel Cancer Screening Program – An ecological analysis
Sun, Jiandong, March, Sonja, Ireland, Michael J., Crawford-Williams, Fiona, Goodwin, Belinda, Hyde, Melissa K., Chambers, Suzanne K., Aitken, Joanne F. and Dunn, Jeff. 2018. "Socio-demographic factors drive regional differences in participation in the National Bowel Cancer Screening Program – An ecological analysis." Australian and New Zealand Journal of Public Health. 42 (1), pp. 92-97. https://doi.org/10.1111/1753-6405.12722
The validity of the distress thermometer in prostate cancer populations
Chambers, Suzanne K., Zajdlewicz, Leah, Youlden, Danny R., Holland, Jimmie C. and Dunn, Jeff. 2014. "The validity of the distress thermometer in prostate cancer populations." Psycho-Oncology: journal of the psychological, social and behavioral dimensions of cancer. 23 (2), pp. 195-203. https://doi.org/10.1002/pon.3391
A randomised controlled trial of a couples-based sexuality intervention for men with localised prostate cancer and their female partners
Chambers, Suzanne K., Occhipinti, Stefano, Schover, Leslie, Nielsen, Lisa, Zajdlewicz, Leah, Clutton, Samantha, Halford, Kim, Gardiner, Robert A. and Dunn, Jeff. 2015. "A randomised controlled trial of a couples-based sexuality intervention for men with localised prostate cancer and their female partners." Psycho-Oncology: journal of the psychological, social and behavioral dimensions of cancer. 24 (7), pp. 748-756. https://doi.org/10.1002/pon.3726
Applying a revised two-factor model of impulsivity to predict health behaviour and well-being
Goodwin, Belinda C., Browne, Matthew, Hing, Nerilee and Russell, Alex M. T.. 2017. "Applying a revised two-factor model of impulsivity to predict health behaviour and well-being." Personality and Individual Differences. 111, pp. 250-255. https://doi.org/10.1016/j.paid.2017.02.029
Defining young in the context of prostate cancer
Chambers, Suzanne K., Lowe, Anthony, Hyde, Melissa K., Zajdlewicz, Leah, Gardiner, Robert A., Sandoe, David and Dunn, Jeff. 2015. "Defining young in the context of prostate cancer." American Journal of Men's Health. 9 (2), pp. 103-114. https://doi.org/10.1177/1557988314529991
Medical help-seeking for sexual concerns in prostate cancer survivors
Hyde, Melissa K., Zajdlewicz, Leah, Wootten, Addie C., Nelson, Christian J., Lowe, Anthony, Dunn, Jeff and Chambers, Suzanne K.. 2016. "Medical help-seeking for sexual concerns in prostate cancer survivors." Sexual Medicine. 4 (1), pp. e7-e17. https://doi.org/10.1016/j.esxm.2015.12.004
Measuring masculinity in the context of chronic disease
Chambers, Suzanne K., Hyde, Melissa K., Oliffe, John L., Zajdlewicz, Leah, Lowe, Anthony, Wootten, Addie C. and Dunn, Jeff. 2016. "Measuring masculinity in the context of chronic disease." Psychology of Men and Masculinity. 17 (3), pp. 228-242. https://doi.org/10.1037/men0000018
Connected and isolated victims of relational aggression: associations with peer group status and differences between girls and boys
Zimmer-Gembeck, Melanie J., Pronk, Rhiarne E., Goodwin, Belinda, Mastro, Shawna and Crick, Nicki R.. 2013. "Connected and isolated victims of relational aggression: associations with peer group status and differences between girls and boys." Sex Roles: a journal of research. 68 (5-6), pp. 363-377. https://doi.org/10.1007/s11199-012-0239-y
Comparing reports of peer rejection: associations with rejection sensitivity, victimization, aggression, and friendship
Zimmer-Gembeck, Melanie J., Nesdale, Drew, McGregor, Leanne, Mastro, Shawna, Goodwin, Belinda and Downey, Geraldine. 2013. "Comparing reports of peer rejection: associations with rejection sensitivity, victimization, aggression, and friendship." Journal of Adolescence. 36 (6), pp. 1237-1246. https://doi.org/10.1016/j.adolescence.2013.10.002
Preferred electronic gaming machine environments of recreational versus problem gamblers: an in-venue mixed methods study
Thorne, Hannah Briony, Goodwin, Belinda, Langham, Erika, Rockloff, Matthew and Rose, Judy. 2016. "Preferred electronic gaming machine environments of recreational versus problem gamblers: an in-venue mixed methods study." Journal of Gambling Issues. https://doi.org/10.4309/jgi.2016.34.12
Reflective minds and open hearts: cognitive style and personality predict religiosity and spiritual thinking in a community sample
Browne, Matthew, Pennycook, Gordan, Goodwin, Belinda and McHenry, Melinda. 2014. "Reflective minds and open hearts: cognitive style and personality predict religiosity and spiritual thinking in a community sample." European Journal of Social Psychology. 44 (7), pp. 736-742. https://doi.org/10.1002/ejsp.2059
EGM jackpots and player behaviour: an in-venue shadowing study
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
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