What do Australians affected by cancer think about oncology researchers sharing research data: a cross-sectional survey

Abstract

Objectives: To characterise the attitudes of Australians affected by cancer towards the sharing of de-identified research data with third parties, including the public. Design, setting, participants: Anonymous online survey between October 2022 and February 2023 of adult Australians previously diagnosed with cancer. Main outcome measures: Self-reported attitudes towards the sharing of human and non-human data, and the hypothetical sharing of their anonymised medical information and responses to the survey. Results: 551 respondents contributed data to the survey. There was strong support for cancer researchers sharing non-human and de-identified human research data with medical doctors (90% and 95% respectively) and non-profit researchers (both 94%). However, this declined when participants were asked whether data should be shared with for-profit researchers (both 64%) or posted publicly (both 61%). When asked if they would hypothetically consent to researchers at their treatment location collecting and sharing their de-identified data publicly, only half agreed (50%). In contrast, after being shown a visual representation of the de-identified survey data, 80% of respondents supported sharing it publicly. A further 10% also supported public sharing of some of the survey data, with the most frequently desired information to be withheld including education history and levels of trust in healthcare stakeholders. Conclusions: Australians affected by cancer support the sharing of research data, particularly with clinician and non-profit researchers. Visualisation of the data to be shared may also enhance support for making research data publicly available. These results should help alleviate any concerns about research participants' attitudes on data sharing, as well as boost researchers' motivation for sharing.