The Gardener and the Walled Garden

Abstract

Platforms for standardising and sharing data between research and care are in construction, as they have been for some years. Currently, they take the form of creating a large ‘knowledge bank’ linking health records and biological samples with explicit consent for research use. Researchers will be able to work with the data without being able to identify patients, through pseudonymising techniques. This virtual research space is described as a walled garden. In this chapter, we ask what/who/when is a person as they are disassembled, transformed, layered and valued; emerging from and disappearing into data that are disaggregated and segregated. Together—an anthropologist, an epidemiologist and a patient who is fortuitously known as the gardener and has participated in many research studies since 2013—we hope to re-aggregate data and reconstruct a fuller history in which the patient is recognisable. This enquiry necessarily raises questions about the different ways in which a person is figured and distributed through personal experience, ethnography and biomedicine.