关于长期流行病学研究中个人健康数据共享的公众态度:KORA研究中的公民科学方法
Ina-Maria Rückert-Eheberg1, Margit Heier2,3, Markus Simon2
1Institute of Epidemiology, Helmholtz Zentrum München, German Research Center for Environmental Health, Neuherberg, Munich, Germany. ina.rueckert-eheberg@helmholtz-munich.de.
BMC public health
|August 26, 2024
概括
在长期健康研究中,尽量减少对随访的损失至关重要. 公民科学方法,专注于参与者利益,信任和清晰的沟通,可以增强长期参与并减少偏见.
科学领域:
- 流行病学 流行病学
- 公共卫生 公共卫生
- 公民科学 公民科学
背景情况:
- 在长期流行病学研究中,失去随访是一个重大挑战,可能会导致结果偏见.
- 参与者的动机可能会波动,需要策略来保持随着时间的推移参与.
- 公民科学为参与者直接参与队列管理提供了一个框架.
研究的目的:
- 调查影响长期参与健康研究的关键因素.
- 探索使用公民科学方法,最大限度地减少跟踪损失的方法.
- 了解参与者对队列管理和参与的看法.
主要方法:
- 与KORA队列的参与者和独立公民进行了指导小组讨论.
- 通过共同创作过程开发了一个问卷.
- 对500名KORA参与者和2400名赫尔姆霍尔茨慕尼黑员工进行了调查.
主要成果:
- 利他主义的动机,个人利益 (如健康检查),数据保护和结果的明确沟通对于持续的利益至关重要.
- 完全数字化通信可能会排除老年人或受教育程度较低的人;纸质方法仍然很重要.
- 对研究机构的信任和了解研究的影响是至关重要的.
结论:
- 有效的队列管理需要证明对公众和个人健康的益处.
- 保持参与者的信任和确保可访问的研究成果传播对于长期研究的成功至关重要.
- 整合参与者的反和利用适当的沟通道是减少跟进损失的关键.
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