884Data sharing willingness and attitudes

Abstract

Background Row-by-row individual participant data (IPD) from a set of similar studies allows meta-analyses with exposure, confounder and outcome standardisation, and additional analyses at little extra cost. The ICMJE recently declared data sharing an ethical obligation. Consequently, registries have introduced mandatory data sharing statements. Our aims were to analyse data sharing willingness, and identify barriers and facilitators to data sharing. Methods We included all trials registered on the Australian New Zealand Clinical Trials Registry (ANZCTR) in 2019. We analysed data sharing statements from registry records, and conducted an in-depth survey. Associations between willingness to share data and trial characteristics (e.g. trial purpose, funding) were analysed. Results Of the 1,517 included trials, 23% planned to share IPD upon completion. Investigators were less willing to share IPD for industry-funded trials (OR = 0.50,95%CI=0.34-0.70), but there was no difference by sample size or health condition. The main reasons for not sharing IPD were concerns about participant privacy (22%), ethics approval limitations (19%) and lack of understanding for the need of IPD (17%). Among the 281 survey respondents, 78% supported data sharing, but only 40% intended to share their data. Major barriers included concerns about time/resources (96%) and insufficient academic recognition (91%). Conclusions There is insufficient willingness to share data, particularly among industry funders. Addressing the identified barriers can improve this. Key messages Data sharing enables the use of new methodologies, such as improved meta-analysis. Low willingness to share data jeopardises the use of these new methodologies and needs to be addressed.