Send message to Author

Short abstract:

Data infrastructures are operating at the intersection between health care and health research. Such data infrastructures gain a new meaning through recent technological developments, political initiatives and legislative frameworks. This paper explores questions of power and access (control).

Long abstract:

Health data is simultaneously a resource for health care and health research. Health data is a potent source for data economies of both the public and private sector but also an object, if not an agent, defining, inscribing, redefining, and challenging risk groups. In the health sector, data infrastructures are operating at the intersection between health care and health research. Such data infrastructures gain a new meaning through recent technological developments, political initiatives and legislative frameworks. All the initiatives have in common that they want to govern the flow of data for a specific purpose. The ambitious initiative of the establishment of a European Health Data Space, for instance, distinguishes 'primary' (health care) from 'secondary use' (health research) of data. What it does share with traditional data infrastructures are questions of governance, interoperability, potentiality, accountability and acceptance by patients and citizens. Ultimately, what needs to be explored are questions of power and access. Who has the decision making power to define what is and what is not moved across borders? How do those borders or boundaries look like across health research or the health care sector? What potentiality is inscribed in this "border control"? Is control over data an imaginary? Who in the end can exercise which forms of control?