在癌症研究中的数据共享:一项定性研究,探索社区成员的偏好
Elizabeth A Johnston1,2,3, Xanthia E Bourdaniotis1, Susannah K Ayre1,2
1Cancer Council Queensland, Fortitude Valley, Queensland, Australia.
Cancer medicine
|August 10, 2024
概括
癌症幸存者和护理人员愿意分享健康数据用于研究. 影响同意的关键因素包括潜在的好处,研究人员的透明度,数据控制和隐私保护.
科学领域:
- 在瘤学瘤学.
- 医疗信息学 医疗信息学
- 患者倡导 患者倡导
背景情况:
- 癌症的生存率和治疗进展取决于参与研究和获得健康记录.
- 社区参与对于了解患者对数据共享的看法至关重要.
研究的目的:
- 探索癌症幸存者和护理人员对健康数据获取和共享研究的偏好.
- 为了确定影响愿意同意癌症研究数据共享的因素.
主要方法:
- 与42名社区成员进行了14次研讨会,主要是癌症幸存者或护理人员.
- 提出了各种数据访问和共享场景进行讨论.
- 通过描述性和主题分析分析了参与者的偏好.
主要成果:
- 86%的参与者愿意分享自我报告数据和特定研究的当前健康记录.
- 62%和44%的人愿意与其他研究人员分别分享当前和未来的健康记录.
- 意愿受潜在的医学进步,研究人员透明度,数据控制和隐私协议的影响.
结论:
- 根据社区偏好,制定了实用策略,以优化数据访问和癌症研究的共享.
- 强调了透明度,控制和隐私在促进癌症研究数据共享方面的重要性.
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