Personalized Medicine Platforms: Turning the ‘Healthy Sick’ and the ‘Worried Well’ Into Valuable Data

Drawing on ethnographic findings from two cases of personalized medicine – a cohort study curating a data population for knowledge production, and a Phase 1 unit testing anticancer treatments – we discuss how the development of personalized treatments is dependent on the involvement of selected groups of people on the margins of standard care, who either initiate medical treatment earlier or remain in active medical treatment longer than standard care allows. We argue that this ‘expansion of the treatable population’ is integral to the development of personalized medicine, and is enabled by a particular way of organizing healthcare and research through a network of actors. We suggest our two sites function as platforms that, through different forms of care, develop and shape connections among heterogeneous actors including patients, researchers, healthcare professionals and pharmaceutical companies. We outline what it takes for our two sites to be established as platforms, first, by creating ties with selected groups of people, transforming them into research populations, second, by turning these populations into data and third, by making data into valuable assets to generate revenue. To conclude, we reflect on how platformization shapes contemporary public healthcare and research infrastructures, as well as who gets treated and with what.