Skovgaard Lea, Grundtvig Anders
Department of Public Health, University of Copenhagen, Copenhagen K, Denmark.
Digit Health. 2023 Apr 20;9:20552076231169832. doi: 10.1177/20552076231169832. eCollection 2023 Jan-Dec.
Digital health data are seen as valuable resources for the development of better and more efficient treatments, for instance through personalised medicine. However, health data are information about individuals who hold opinions and can challenge how data about them are used. Therefore it is important to understand public discussions around reuse of digital health data. Social media have been heralded as enabling new forms of public engagement and as a place to study social issues. In this paper, we study a public debate on Twitter about personalised medicine. We explore who participates in discussions about personalised medicine on Twitter and what they tweet about. Based on user-generated biographies we categorise users as having a 'Professional interest in personalised medicine' or as 'Private' users. We describe how users within the field tweet about the promises of personalised medicine, while users unaffiliated with the field tweet about the concrete realisation of these ambitions in the form of a new infrastructure and express concerns about the conditions for the implementation. Our study serves to remind people interested in public opinion that Twitter is a platform used for multiple purposes by different actors and not simply a bottom-up democratic forum. This study contributes with insights relevant to policymakers wishing to expand infrastructures for reuse of health data. First, by providing insights into what is discussed about health data reuse. Second, by exploring how Twitter can be used as a platform to study public discussions about reuse of health data.
数字健康数据被视为开发更好、更高效治疗方法的宝贵资源,例如通过个性化医疗。然而,健康数据是关于持有观点且能够对其个人数据的使用方式提出质疑的个人的信息。因此,了解围绕数字健康数据再利用的公众讨论非常重要。社交媒体被誉为能够促成新形式的公众参与,并成为研究社会问题的场所。在本文中,我们研究了推特上关于个性化医疗的一场公开辩论。我们探讨了谁在推特上参与有关个性化医疗的讨论以及他们发推的内容。基于用户生成的个人简介,我们将用户分类为“对个性化医疗有专业兴趣”的用户或“普通”用户。我们描述了该领域内的用户如何发推谈论个性化医疗的前景,而与该领域无关的用户则以新基础设施的形式发推谈论这些抱负的具体实现,并对实施条件表示担忧。我们的研究旨在提醒关注公众舆论的人们,推特是一个被不同行为者用于多种目的的平台,而不仅仅是一个自下而上的民主论坛。这项研究为希望扩展健康数据再利用基础设施的政策制定者提供了相关见解。第一,通过深入了解关于健康数据再利用的讨论内容。第二,通过探索推特如何用作研究关于健康数据再利用的公众讨论的平台。