Muller Sam Ha, van Thiel Ghislaine Jmw, Mostert Menno, van Delden Johannes Jm
Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, The Netherlands.
Digit Health. 2023 Aug 16;9:20552076231190997. doi: 10.1177/20552076231190997. eCollection 2023 Jan-Dec.
Dynamic consent forms a comprehensive, tailored approach for interacting with research participants. We conducted a survey study to inquire how research participants evaluate the elements of consent, information provision, communication and return of results within dynamic consent in a hypothetical health data reuse scenario. We distributed a digital questionnaire among a purposive sample of patient panel members. Data were analysed using descriptive and nonparametric inferential statistics. Respondents favoured the potential to manage changing consent preferences over time. There was much agreement between people favouring closer and more specific control over data reuse approval and those in favour of broader approval, facilitated by an opt-out system or an independent data reuse committee. People want to receive more information about reuse, outcomes and return of results. Respondents supported an interactive model of research participation, welcoming regular, diverse and interactive forms of communication, like a digital communication platform. Approval for reuse and providing meaningful information, including meaningful return of results, are intricately related to facilitating better communication. Respondents favoured return of actionable research results. These findings emphasize the potential of dynamic consent for enabling participants to maintain control over their data are being used for purposes by . Allowing different options to shape a dynamic consent interface in health data reuse in a personalized manner is pivotal to accommodate plurality in a flexible though robust manner. Interaction via dynamic consent enables participants to tailor the elements of participation they deem relevant to their own preferences, engaging diverse perspectives, interests and preferences.
动态同意构成了一种与研究参与者互动的全面、量身定制的方法。我们进行了一项调查研究，以探究在假设的健康数据再利用场景中，研究参与者如何评估动态同意中的同意要素、信息提供、沟通及结果反馈。我们在一个有目的选取的患者小组成员样本中分发了一份数字问卷。使用描述性和非参数推断统计方法对数据进行了分析。受访者赞成随着时间推移管理不断变化的同意偏好的可能性。在赞成对数据再利用批准进行更严格、更具体控制的人和赞成通过退出系统或独立数据再利用委员会促成的更广泛批准的人之间，存在很多共识。人们希望获得更多关于再利用、结果及结果反馈的信息。受访者支持研究参与的互动模式，欢迎定期、多样且互动的沟通形式，比如数字通信平台。对再利用的批准以及提供有意义的信息，包括有意义的结果反馈，与促进更好的沟通密切相关。受访者赞成反馈可采取行动的研究结果。这些发现强调了动态同意在使参与者能够对其数据用于何种目的保持控制方面的潜力。允许以个性化方式塑造健康数据再利用中动态同意界面的不同选项，对于以灵活而稳健的方式适应多样性至关重要。通过动态同意进行互动，使参与者能够根据自己的偏好调整他们认为与参与相关的要素，从而吸引不同的观点、兴趣和偏好。
