心理健康数据治理模式的偏好:与年轻人的定性研究
Emma Grace Carey1, Faith Oluwasemilore Adeyemi2, Lakshmi Neelakantan3
1Department of Psychiatry, University of Cambridge, Cambridge, United Kingdom.
JMIR formative research
|April 23, 2024
概括
英国的年轻人热衷于通过智能手机分享心理健康数据进行研究. 然而,他们强调需要控制访问和道德数据管理,以确保安全和适当使用.
科学领域:
- 数字心理健康研究数字心理健康研究
- 青少年心理学 青少年心理学
- 在健康领域的数据治理.
背景情况:
- 移动设备为从年轻人那里收集大量心理健康数据提供了一种可行的方法.
- 在像英国这样的高收入国家,智能手机的普遍使用为大规模的心理健康数据收集提供了机会.
- 建立一个全球数据库需要理解和与年轻人对他们的数据的价值观保持一致.
研究的目的:
- 探索英国年轻人在管理,分享和使用他们的心理健康数据方面的偏好.
- 评估年轻人分享心理健康数据的意愿和感知安全性.
- 在年轻人中确定首选的数据共享合作伙伴和协议.
主要方法:
- 46名年轻人接受了关于数据治理和研究的教育.
- 基于网络的小组会议利用协商民主来达成共识.
- 框架方法用于数据分析.
主要成果:
- 参与者对为研究提供心理健康数据表现出热情.
- 年轻人认识到共享数据的潜力,以改善心理健康的理解和服务.
- 关键问题包括需要分布式访问控制,权力和多样化,有道德训练的数据管理.
结论:
- 在英国,收集智能手机数据用于青年心理健康研究是可行的.
- 优先考虑年轻人对数据管理,存储和访问的偏好,对于建立全球数据库至关重要.
- 强有力的道德程序是成功建立这些倡议的基础.
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