Abstract
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.
Originalsprog | Engelsk |
---|---|
Tidsskrift | Digital Health |
Vol/bind | 9 |
Antal sider | 12 |
ISSN | 2055-2076 |
DOI | |
Status | Udgivet - 2023 |
Bibliografisk note
Funding Information:The authors would like to thank Klaus Hoeyer, Mette Nordahl Svendsen and the IPW-writing group at UVienna for valuable feedback on an earlier version of this article. The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The authors’ research has received funding from the Carlsberg Foundation (Semper Ardens Grant CF17-0016).
Funding Information:
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The authors’ research has received funding from the Carlsberg Foundation (Semper Ardens Grant CF17-0016).
Publisher Copyright:
© The Author(s) 2023.