Dreaming with data: Assembling responsible knowledge practices in data-driven healthcare

Data use in healthcare: there is a contrast between dreams and practices In recent years, terms such as “big data”, “machine learning” and “artificial intelligence” have repeatedly made similar promises. Data would help create more effective interventions and tailor-made treatments. As a result, the quality of care would improve, lives would be saved and healthcare costs reduced. Marthe Stevens investigated what happens when such “data dreams” become drivers for concrete initiatives in healthcare by studying literature and data initiatives in the Netherlands and Europe. Each time she noticed a contrast between dreams and practices. Data are expected to revolutionize healthcare. This research shows that the media mainly emphasize the positive sides of data and the criticism is largely limited to a few themes, such as privacy, while there are also other pressing questions. For example, we do not know how to best organize responsibilities around data initiatives. In the “dreams”, the developments seem to be going fast. Marthe Stevens saw that healthcare professionals work together with lawyers, technicians and ethicists to start data initiatives in healthcare organizations. For example, to make a model that predicts the chance of side effects of medicines. However, these initiatives are not easy. It takes the professionals time to get to understand each other’s language and working methods. Marthe Stevens argues that we should not understand data dreams as practices. This leads to a tendency towards overregulation and limits social discussions. Instead, we must create conditions in which professionals from different disciplines can come together and properly weigh all the legal, technical and ethical dimensions.