Institute of Epidemiology, Helmholtz Zentrum München, German Research Center for Environmental Health, Neuherberg, Munich, Germany.
KORA Study Centre, University Hospital of Augsburg, Augsburg, Germany.
BMC Public Health. 2024 Aug 26;24(1):2317. doi: 10.1186/s12889-024-19730-0.
Loss to follow-up in long-term epidemiological studies is well-known and often substantial. Consequently, there is a risk of bias to the results. The motivation to take part in an epidemiological study can change over time, but the ways to minimize loss to follow-up are not well studied. The Citizen Science approach offers researchers to engage in direct discussions with study participants and to integrate their opinions and requirements into cohort management.
Guided group discussions were conducted with study participants from the KORA cohort in the Augsburg Region in Germany, established 40 years ago, as well as a group of independently selected citizens. The aim was to look at the relevant aspects of health studies with a focus on long-term participation. A two-sided questionnaire was developed subsequently in a co-creation process and presented to 500 KORA participants and 2,400 employees of the research facility Helmholtz Munich.
The discussions revealed that altruistic motivations, (i.e. supporting research and public health), personal benefits (i.e. a health check-up during a study examination), data protection, and information about research results in layman's terms were crucial to ensure interest and long-term study participation. The results of the questionnaire confirmed these aspects and showed that exclusively digital information channels may be an obstacle for older and less educated people. Thus, paper-based media such as newsletters are still important.
The findings shed light on cohort management and long-term engagement with study participants. A long-term health study needs to benefit public and individual health; the institution needs to be trustworthy; and the results and their impact need to be disseminated in widely understandable terms and by the right means of communication back to the participants.
长期流行病学研究中的失访是众所周知的，而且通常相当严重。因此，研究结果存在偏倚的风险。参与流行病学研究的动机随着时间的推移可能会发生变化，但减少失访的方法尚未得到充分研究。公民科学方法为研究人员提供了与研究参与者直接讨论的机会，并将他们的意见和要求纳入队列管理中。
在德国奥格斯堡地区的 KORA 队列中，对 40 年前建立的研究参与者以及一组独立选择的公民进行了引导式小组讨论。目的是关注长期参与，研究健康研究的相关方面。随后在共同创作过程中开发了一份双面问卷，并提供给 500 名 KORA 参与者和 2400 名研究机构 Helmholtz Munich 的员工。
讨论表明，利他主义动机（即支持研究和公共卫生）、个人利益（即研究检查期间的健康检查）、数据保护和通俗易懂的研究结果信息对于确保兴趣和长期研究参与至关重要。问卷的结果证实了这些方面，并表明仅数字信息渠道可能对年龄较大和受教育程度较低的人构成障碍。因此，基于纸张的媒体（如通讯）仍然很重要。
这些发现揭示了队列管理和与研究参与者长期参与的重要性。长期健康研究需要有益于公共和个人健康；机构需要值得信赖；结果及其影响需要以通俗易懂的术语并通过正确的沟通方式传达回参与者。
