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

IF 1.4 4区 医学 Q4 ONCOLOGY
Daniel G. Hamilton, Sarah Everitt, Matthew J. Page, Fiona Fidler
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引用次数: 0

Abstract

Aim

Previous research has shown patients and the public in Australia generally support medical researchers in making de-identified research data available to other scientists. However, this research has focussed on certain types of data and recipients. We surveyed Australians affected by cancer to characterize their attitudes toward the sharing of research data with multiple third parties, including the public.

Methods

A short, anonymous online survey of Australians with a previous diagnosis of cancer was advertised between October 27, 2022, and February 27, 2023. Quantitative responses were analyzed with descriptive statistics. Free-text responses were coded deductively and summarised using content analysis.

Results

In total, 551 respondents contributed data to the survey. There was strong support for cancer researchers sharing non-human and de-identified human research data with clinicians (90% and 95%, respectively) and non-profit researchers (both 94%). However, fewer participants supported sharing data with for-profit researchers (both 64%) or publicly (both 61%). When asked if they would hypothetically consent to researchers at their treatment location using and sharing their de-identified data publicly, only half agreed. In contrast, after being shown a visual representation of the de-identified survey data, 80% of respondents supported sharing it publicly.

Conclusion

Australians affected by cancer support the sharing of research data, particularly with clinicians and non-profit researchers. Our results also imply that visualization of the data to be shared may enhance support for making it publicly available. These results should help alleviate any concerns about research participants’ attitudes toward data sharing, as well as boost researchers’ motivation for sharing.

Abstract Image

受癌症影响的澳大利亚人如何看待肿瘤研究人员共享研究数据?横断面调查。
目的:以往的研究表明,澳大利亚的患者和公众普遍支持医学研究人员向其他科学家提供去标识化的研究数据。不过,这些研究主要集中在某些类型的数据和接收者上。我们对受癌症影响的澳大利亚人进行了调查,以了解他们对与包括公众在内的多个第三方共享研究数据的态度:我们在 2022 年 10 月 27 日至 2023 年 2 月 27 日期间对曾被诊断患有癌症的澳大利亚人进行了一次简短的匿名在线调查。对定量回复进行了描述性统计分析。自由文本回复采用演绎法编码,并通过内容分析法进行总结:共有 551 位受访者为调查提供了数据。癌症研究人员非常支持与临床医生(分别为 90% 和 95%)和非营利性研究人员(均为 94%)共享非人类和去标识化人类研究数据。但是,支持与营利性研究人员共享数据(均为 64%)或公开共享数据(均为 61%)的参与者较少。当被问及他们是否会假设同意其治疗地点的研究人员公开使用和共享他们的去标识化数据时,只有一半人表示同意。相反,在看到去标识化调查数据的直观展示后,80% 的受访者支持公开共享这些数据:结论:受癌症影响的澳大利亚人支持共享研究数据,尤其是与临床医生和非营利性研究人员共享。我们的研究结果还表明,将共享数据可视化可能会增强人们对公开共享数据的支持。这些结果应有助于减轻研究参与者对数据共享态度的担忧,并提高研究人员共享数据的积极性。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
CiteScore
3.40
自引率
0.00%
发文量
175
审稿时长
6-12 weeks
期刊介绍: Asia–Pacific Journal of Clinical Oncology is a multidisciplinary journal of oncology that aims to be a forum for facilitating collaboration and exchanging information on what is happening in different countries of the Asia–Pacific region in relation to cancer treatment and care. The Journal is ideally positioned to receive publications that deal with diversity in cancer behavior, management and outcome related to ethnic, cultural, economic and other differences between populations. In addition to original articles, the Journal publishes reviews, editorials, letters to the Editor and short communications. Case reports are generally not considered for publication, only exceptional papers in which Editors find extraordinary oncological value may be considered for review. The Journal encourages clinical studies, particularly prospectively designed clinical trials.
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