为研究人员重新构想患者数据访问
Stephen T Parente1, Charles E Phelps2
1Department of Finance, Carlson School of Management, University of Minnesota, Minneapolis, MN, USA.
概括
为了最大限度地获得健康经济学和结果研究 (HEOR) 的电子健康记录 (EHR),需要新的数据系统. 公共和私人支持对于为这些系统提供资金至关重要,同时保护患者的隐私.
科学领域:
- 卫生经济学和结果研究 (HEOR)
- 健康数据管理 管理健康数据
- 患者的隐私 患者的隐私
背景情况:
- 电子健康记录 (EHR) 的广泛采用为利用HEOR研究的传统索赔数据之外的全面患者数据提供了机会.
- 现有的数据基础设施和知识产权框架可能无法优化以最大限度地使研究人员访问电子健康记录数据,同时确保强大的患者隐私保护.
研究的目的:
- 探索组织结构和知识产权,以促进研究人员更好地获得HEOR的完整EHR数据.
- 在扩大用于研究的EHR数据利用中,确定保护患者隐私权的策略.
- 分析患者,聚合器和系统层面的数据保护要求和财务激励措施.
主要方法:
- 对EHR数据聚合的现有和拟议的组织结构和知识产权进行比较分析.
- 对患者参与和数据聚合的数据保护要求和财务激励措施的评估.
- 评估信任第三方 (TTP) 和二次数据聚合器在创建可用的HEOR数据库中的作用.
主要成果:
- 新的HEOR数据系统需要新的组织模式和融资机制,以及严格的患者数据隐私措施.
- 治疗法促进了TTP集成患者数据的市场,二级聚合器将单个EHR结合到有价值的HEOR数据库中.
- 为了最大限度地提高患者参与度,数据传输成本的完整医疗保险覆盖是必不可少的.
结论:
- 仍然需要取得重大进展,以实现HEOR数据的最大可用性,同时维护患者的隐私.
- HEOR数据是一种公共利益,表明单独的私人激励措施对于系统的创建和运行是不足的.
- 公共和私人投资对于扩大系统和增强其对公共卫生的影响至关重要.
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