'It’s not something you can take in your hands'. Swiss experts’ perspectives on health data ownership: an interview-based study

Objectives The evolution of healthcare and biomedical research into data-rich fields has raised several questions concerning data ownership. In this paper, we aimed to analyse the perspectives of Swiss experts on the topic of health data ownership and control. Design In our qualitative study, we selected participants through purposive and snowball sampling. Interviews were recorded, transcribed verbatim and then analysed thematically. Setting Semi-structured interviews were conducted in person, via phone or online. Participants We interviewed 48 experts (researchers, policy makers and other stakeholders) of the Swiss health-data framework. Results We identified different themes linked to data ownership. These include: (1) the data owner: data-subjects versus data-processors; (2) uncertainty about data ownership; (3) labour as a justification for data ownership and (4) the market value of data. Our results suggest that experts from Switzerland are still divided about who should be the data owner and also about what ownership would exactly mean. There is ambivalence between the willingness to acknowledge patients as the data owners and the fact that the effort made by data-processors (eg, researchers) to collect and manage the data entitles them to assert ownership claims towards the data themselves. Altogether, a tendency to speak about data in market terms also emerged. Conclusions The development of a satisfactory account of data ownership as a concept to organise the relationship between data-subjects, data-processors and data themselves is an important endeavour for Switzerland and other countries who are developing data governance in the healthcare and research domains. Setting clearer rules on who owns data and on what ownership exactly entails would be important. If this proves unfeasible, the idea that health data cannot truly belong to anyone could be promoted. However, this will not be easy, as data are seen as an asset to control and profit from.
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