为孕妇和哺乳期妇女建立一个可持续的学习医疗保健系统:在数据访问提供者之间进行的采访研究
Marieke J Hollestelle1,2, Rieke van der Graaf1,2, Miriam C J M Sturkenboom1,3
1Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, Netherlands.
在学习医疗保健系统 (LHSs) 中的数据访问提供者在提高孕妇和哺乳期患者的药物安全方面看到了机遇. 然而,透明的治理和信任对于这些道德上复杂的公私伙伴关系的可持续性至关重要.
科学领域:
- 医疗保健服务研究 医疗服务研究
- 数据科学数据科学数据科学
- 公共卫生 公共卫生
背景情况:
- 学习医疗保健系统 (LHSs) 利用健康数据来改善患者的治疗结果.
- 孕妇和哺乳期患者的药物安全性有有限的证据基础.
- 数据访问提供商 (DAP) 是开发可持续和道德LHS的关键利益相关者.
研究的目的:
- 探索参与建设可持续和道德LHS的DAP的观点.
- 了解参与者对在健康数据研究的公私伙伴关系中的合作的看法.
主要方法:
- 质量面试设计. 质量面试设计.
- 与IMI ConcePTION项目参与者进行了14次采访.
- 伪名化转录的专题分析.
主要成果:
- 出现了三个主题:机会/责任,参与条件和生态系统挑战.
- 受访者认为,除了为药物安全创造知识外,还有各种各样的机会.
- 参与的主要条件包括资源,科学成果,信任和透明度.
结论:
- 受访者的动机是提高对孕妇和哺乳期患者药物安全性的知识.
- 重点是项目贡献,而不是仅仅是伦理数据处理.
- 透明的治理和公众信任对于LHS的成功和可持续性至关重要.
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