Data sharing in cancer research: A qualitative study exploring community members' preferences.
Ontology highlight
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.
SUBMITTER: Johnston EA
PROVIDER: S-EPMC11315867 | biostudies-literature | 2024 Aug
REPOSITORIES: biostudies-literature
Publications
Data sharing in cancer research: A qualitative study exploring community members' preferences.
Johnston Elizabeth A EA Bourdaniotis Xanthia E XE Ayre Susannah K SK Zajdlewicz Leah L Beesley Vanessa L VL Goodwin Belinda C BC
Cancer medicine 20240801 15
<h4>Background</h4>Advancements in cancer treatment and survivorship rely on participation in research and access to health records.<h4>Methods</h4>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 th ...[more]
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