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

Abstract

ObjectivesThe 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.DesignIn our qualitative study, we selected participants through purposive and snowball sampling. Interviews were recorded, transcribed verbatim and then analysed thematically.SettingSemi-structured interviews were conducted in person, via phone or online.ParticipantsWe interviewed 48 experts (researchers, policy makers and other stakeholders) of the Swiss health-data framework.ResultsWe 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.ConclusionsThe 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.

Evolution or Revolution? Recommendations to Improve the Swiss Health Data Framework

“…The overall methodology of the qualitative side of the project of which this study is part has already been previously described (34). Here we provide a quick overview and we focus on the specific methodological approach used for data analysis of this study.…”

“…The project included also a systematic review (30) and the analysis of relevant legal (31,32) and ethical (33) issues. From the qualitative part of the project, an article on the conception of health data ownership has been written (34). In this manuscript we focus exclusively on our findings concerning the recommendations to improve the health data situation in Switzerland and we discuss their feasibility against the political and legal situation of the country.…”

Austria’s Digital Vaccination Registry: Stakeholder Views and Implications for Governance

“…Digitalization processes often touch upon the question of data ownership and use. The conflicting ideas of health data ownership have already been identified as a core conflict in data governance of healthcare and research domains [37,38]. It is thus not surprising that, in the case discussed here, data ownership seems to have different meanings and significance for different stakeholders, including policy officials, healthcare providers, citizens and local health authorities.…”

“…The rushed legislative process was also criticized by legal experts. The draft bill was highly technical, containing 466 pages of specific technical details which could not be taken into consideration by the data privacy commission during the legal evaluation phase [37]. It is in this sense that the crisis helped to reduce a longstanding political problem to a technical one.…”

Do Physicians Have a Duty to Support Secondary Use of Clinical Data in Biomedical Research? An Inquiry into the Professional Ethics of Physicians

“…As for the first level (1), there is a vivid discussion on the question if data ownership is a viable concept 71 and there are fundamental concerns about the concept of data ownership. (2) A reasonable approach for physicians to make ownership claims follows the Lockean notion of ownership 72 , which assumes that ownership is acquired by a person investing labor in a natural resource and thus having a claim to the product of that labor. 73 If we translate this approach to clinical data, physicians appear to be the ones who may claim ownership as they generate the data during their work.…”