"我只是假设这已经做了":加拿大患者偏好加强数据共享精确瘤学
Samantha Pollard1,2, Morgan Ehman1, Anna Hermansen1,3
1Cancer Control Research, BC Cancer Research Institute, Vancouver, BC, Canada.
JCO precision oncology
|August 8, 2024
概括
患者支持为精密瘤学研究提供安全的健康数据共享,但希望防止滥用和不公平访问. 患者的意见对于设计建立信任和保护隐私的数据共享平台至关重要.
科学领域:
- 医疗信息学 医疗信息学
- 生物创新是一种生物创新.
- 癌症研究 癌症研究
背景情况:
- 加拿大的健康数据被封存起来,阻碍了个性化癌症护理和证据生成.
- 安全的数据共享平台 (SDSPs) 提供了跨数据分析和研究人员访问的解决方案.
- 患者的价值观和关切必须指导SDSP设计,以确保信任和参与.
研究的目的:
- 为设计一个泛加拿大安全数据共享平台,对患者的偏好进行定性探索.
- 了解患者对数据共享的看法,用于精密瘤学研究.
- 确定患者关注的问题和健康数据共享所需的保障措施.
主要方法:
- 对28名癌症患者进行了泛加拿大虚拟焦点小组 (2022年1月 - 2023年7月).
- 利用三个定性研究人员的专题分析来分析焦点组数据.
- 整合了会员检查调查,用于早期分析反.
主要成果:
- 患者通常支持增加对精确瘤学的健康数据的访问.
- 关键问题包括无意使用数据,重新识别,以及对治疗方法的不公平获取.
- 患者强调需要强有力的数据访问监督,治理和透明度.
结论:
- 安全的数据共享策略必须主动解决患者感知到的风险.
- 患者的意见对于开发数据治理和共享框架至关重要.
- 将研究能力与患者自主权和隐私平衡至关重要.
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