For years, attempts at ensuring the social sustainability of digital solutions have focused on ensuring that they are perceived as helpful and easy to use. A smooth and seamless work experience has been the goal to strive for. Based on document analysis and interviews with 15 stakeholders, we trace the setting up of a data infrastructure in Danish General Practice that had achieved just this goal – only to end in a scandal and subsequent loss of public support. The ease (...) of data access made it possible for data to be extracted, exchanged and used by new actors and for new purposes – without those producing the data fully realizing the expansion of the infrastructure. We suggest that the case has wider relevance for a still more data-intensive healthcare sector and a growing data economy: when those who produce the data are not made aware of new uses of data, it makes it more difficult to resolve potential conflicts along the way. In the Danish case, conflicting views on legitimate data use led to the collapse of the infrastructure. Therefore, while seamlessness may be a solution to the old problem of a poor fit between user and technology, this celebrated virtue may also involve new problems relating to social instability. As digital solutions tend to be integrated still more seamlessly in still more of our activities, we need to develop political mechanisms to define and protect the rights and obligations of both data suppliers and users in order to ensure the long-term sustainability of digital infrastructures. (shrink)

Throughout the Global North, policymakers invest in large-scale integration of health-data infrastructures to facilitate the reuse of clinical data for administration, research, and innovation. Debates about the ethical implications of data repurposing have focused extensively on issues of patient autonomy and privacy. We suggest that it is time to scrutinize also how the everyday work of healthcare staff is affected by political ambitions of data reuse for an increasing number of purposes, and how different purposes are prioritized. Our analysis builds (...) on ethnographic studies within the Danish healthcare system, which is internationally known for its high degree of digitalization and well-connected data infrastructures. Although data repurposing ought to be relatively seamless in this context, we demonstrate how it involves costs and trade-offs for those who produce and use health data. Even when IT systems and automation strategies are introduced to enhance efficiency and reduce data work, they can end up generating new forms of data work and fragmentation of clinically relevant information. We identify five types of data work related to the production, completion, validation, sorting, and recontextualization of health data. Each of these requires medical expertise and clinical resources. We propose that the implications for these forms of data work should be considered early in the planning stages of initiatives for large-scale data sharing and reuse, such as the European Health Data Space. We believe that political awareness of clinical costs and trade-offs related to such data work can provide better and more informed decisions about data repurposing. (shrink)