Bold claims about health data: Exploring economic estimates in policy and consultancy reports

What is health data worth? How much money could we save, or generate, by sharing health data across borders? Such questions are now routinely posed in policy and consultancy reports. If raised 50 years ago, such questions probably would have been perceived as peculiar. The value of health data was clinical and administrative, not economic. Today, however, economic estimates on the value of health data are ever more present in policymaking. In this article, we explore this phenomenon by asking: Who produces these reports? How is the credibility of estimates established? And how are these estimates taken up in other texts? We focus on EU policy and consultancy reports because of the EU's current attempts to take on global leadership in the field through new regulations, such as the European Health Data Space, aimed at boosting health data reuse. Estimates are presented as evidence-based; yet closer examination reveals inconsistencies, omissions of assumptions and models, and uses of what we call “look-alike mathematics” and fanciful ways of quantifying value. These are all features that undermine accountability. Drawing on STS literature, we see the estimates as emerging within an assemblage of consulting firms and policymakers working together to establish claims and shield them from scrutiny. Despite the lack of supporting evidence, estimates travel into other reports and scientific texts where they operate as facts. Moving forward, we propose a more reflective approach to quantification in line with what has been called “post-normal science” which communicates uncertainty and fosters transparency, inclusivity, and accountability.