探索数据信任委员会的实施:对流程和实践的定性评估
Syka Iqbal1,2, Sophie Moniz1, Fiona Bennin1
1Rapid Research Evaluation and Appraisal Lab (RREAL), Department of Targeted Intervention, University College London, London, UK.
Research involvement and engagement
|March 6, 2025
概括
数据信任委员会 (DTC) 改善了医院数据访问的研究,加强监督和效率. 沟通和角色明确性的挑战需要注意最佳的患者益处和数据的伦理使用.
科学领域:
- 医疗保健服务研究 医疗服务研究
- 数据治理数据治理
- 让公众参与到研究中去.
背景情况:
- 越来越需要将医院数据连接起来,以便进行健康研究和改善服务.
- 公众和患者参与在道德数据获取和建立信任方面发挥着至关重要的作用.
- 在伦敦的一家医院评估数据信任委员会 (DTC) 的实施情况.
研究的目的:
- 评估数据信任委员会 (DTC) 对研究效率的影响.
- 了解利益相关者 (患者,工作人员,研究人员) 与DTC的经验.
- 评估DTC在数据治理和负责任的数据访问方面的作用.
主要方法:
- 使用半结构面试进行快速定性评估.
- 有目的地抽取DTC成员,与会者和研究人员的样本.
- 对利益相关者的经验和看法进行主题分析.
主要成果:
- DTC影响研究监督,数据访问和批准流程.
- 利益相关者对DTC目的和决策的看法各不相同.
- 确定的挑战包括角色澄清,沟通缺口和技术障碍.
结论:
- DTC重塑了研究监管流程,可能有利于患者.
- 将伦理风险与患者利益之间的平衡是一个持续的挑战.
- 优化DTC实施需要解决角色明确性,沟通和参与.
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