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.

The authors have declared no competing interest.

This study did not receive any funding.

I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.

Yes

The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

The STEMM2 Human Ethics Committee of The University of Melbourne gave ethical approval for this work (Project ID: 2022-22111-32090-5).

I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals.

Yes

I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).

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I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable.

Yes

Aggregate data, study materials and analytic code are publicly available on the project's Open Science Framework page under a Creative Commons Zero v1.0 Universal (CC0 1.0) license (DOI: 10.17605/OSF.IO/M52K3). Furthermore, so as not to deter people with strong views against public sharing of data from participating in the survey, we did not seek participants' consent to share de-identified participant-level data publicly. However, we did obtain participants' consent to release de-identified data to researchers for future research. Researchers interested in obtaining access to the study dataset can do so by following the instructions on the project's Open Science Framework page (https://osf.io/m52k3/).

https://doi.org/10.17605/OSF.IO/M52K3