Who tweets what about personalised medicine? Promises and concerns from Twitter discussions in Denmark
Publikation: Bidrag til tidsskrift › Tidsskriftartikel › Forskning › fagfællebedømt
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Who tweets what about personalised medicine? Promises and concerns from Twitter discussions in Denmark. / Skovgaard, Lea; Grundtvig, Anders.
I: Digital Health, Bind 9, 2023.Publikation: Bidrag til tidsskrift › Tidsskriftartikel › Forskning › fagfællebedømt
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TY - JOUR
T1 - Who tweets what about personalised medicine? Promises and concerns from Twitter discussions in Denmark
AU - Skovgaard, Lea
AU - Grundtvig, Anders
N1 - Publisher Copyright: © The Author(s) 2023.
PY - 2023
Y1 - 2023
N2 - 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.
AB - 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.
KW - Denmark
KW - Personalised medicine < personalised medicine
KW - public debate
KW - reuse of health data
KW - twitter < media
U2 - 10.1177/20552076231169832
DO - 10.1177/20552076231169832
M3 - Journal article
C2 - 37113257
AN - SCOPUS:85153624014
VL - 9
JO - Digital Health
JF - Digital Health
SN - 2055-2076
ER -
ID: 345970488