对数据获取和共享健康数据的态度:对澳大利亚数据保管人观点的案例研究
Richard J Varhol1, Suzanne Robinson1,2, Crystal Man Ying Lee1
1Curtin University, Bentley, WA, Australia.
概括
在澳大利亚,有效的健康数据共享面临立法和文化障碍. 解决这些问题需要一致的框架和透明的流程,以改善研究和健康成果.
科学领域:
- 医疗信息学 医疗信息学
- 公共卫生研究 公共卫生研究
- 数据管理数据管理
背景情况:
- 有效的健康数据共享对于公共卫生研究和改善健康结果至关重要.
- 数据保管人面临的障碍阻碍了有效的健康信息交换研究.
- 本研究探讨了澳大利亚卫生和人力服务部门的数据托管挑战,以改善数据共享.
研究的目的:
- 从数据保管人的角度探索健康数据共享的复杂性.
- 在数据请求中识别立法和组织文化挑战.
- 提出促进健康数据共享的战略.
主要方法:
- 半结构面试的定性主题分析.
- 数据来自澳大利亚9个医疗保健组织的11个数据托管机构.
- 探索关于健康数据共享实践和挑战的观点.
主要成果:
- 立法障碍,非统一的数据访问标准和不一致的同意协议阻碍了数据共享.
- 内部组织因素,如数据请求评估,文化和态度是关键的障碍.
- 鉴定到的挑战影响了研究健康数据的有效共享.
结论:
- 克服障碍需要明确,一致的数据访问立法框架.
- 标准化,透明和高效的数据请求评估流程是必不可少的.
- 从负债转向资产的数据感知驱动创新,改善卫生部门的决策.
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