根据"21世纪治疗法案" (the 21st Century Cures Act) 的规定,儿童和青少年电子健康数据共享实践的变化
Shikha Sinha1,2, Michael Bedgood3,4, Raghuveer Puttagunta1,5
1Department of Informatics, Geisinger Health System, Danville, PA 17821, United States.
Journal of the American Medical Informatics Association : JAMIA
|August 29, 2023
概括
医疗机构在为儿科患者实施信息屏蔽规则方面表现出显著的差异. 不同的策略影响数据访问,可能导致隐私侵犯和患者对健康记录的困惑.
科学领域:
- 医疗信息学 医疗信息学
- 医疗保健政策 医疗保健政策
- 儿科护理 儿科护理
背景情况:
- "21世纪疗法法案"引入了信息封锁条款,以提高患者获得健康数据的机会.
- 这些条款的实施在各个医疗机构之间有所不同,特别是在儿科环境中.
研究的目的:
- 描述美国为儿科患者服务的医疗机构在实施信息屏蔽条款方面的现实实践和变化.
- 评估患者和代理门户的访问以及数据细分能力如何与美国互操作性核心数据 (USCDI) 版本1保持一致.
主要方法:
- 一项在线调查分发给了美国6个州的10个医疗保健机构.
- 在调查之后,进行了结构化的视频会议采访,以收集详细的实施实践.
- 专注于USCDI版本1中的数据类和细分能力.
主要成果:
- 所有接受调查的组织都实施了信息屏蔽条款.
- 对于用户和代理的门户帐户类型存在差异.
- 虽然实验室,药物,问题列表,成像和笔记可以与家长/监护人共享,但保护敏感数据的方法不同,与其他用户类型的数据共享各不相同.
结论:
- 实施信息屏蔽规则的显著变化为患者和家人创造了隐私侵犯和数据完整性混乱的潜力.
- 医疗保健组织需要从卫生信息技术国家协调员办公室获得关于未成年人/青少年隐私的更明确的指导,并从电子健康记录供应商获得更好的细分.
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