Socio-material factors shaping patient data journeys in the United Kingdom

In a context where recent controversial data sharing initiatives between the NHS and external parties have generated dissatisfaction, confusion and uneasiness among the public, it is relevant to pay attention to social, cultural, political and ethical issues related to how power dynamics play out in the production, use and movement of patient data. Adopting a Critical Data Studies perspective, this in-depth qualitative study contributes to understanding how sociocultural values interact with material conditions to shape "data journeys" in the UK health sector, focusing on the reuse of patient data for research. By applying the Data Journeys approach (Bates et al., 2016) and integrating the notion of Data Valences (Fiore-Gartland & Neff, 2015) this work helps to understand university-based researchers' culture, how it relates to other data cultures, and how that impacts the flow of patient data generated in the UK healthcare sector. In order to address the research aim, a critical thematic analysis of interviews with university-based researchers and other key stakeholders in the field, and key documents (e.g. data sharing policies, legislation, annual reports) was conducted. Five data journeys were followed as data travelled to be used in projects exploring stroke prevention, antibiotic resistance, urinary tract infections, psychotic disorders, and rectal cancer. Findings of the research indicate that university-based researchers have tended to embrace the big promises of big data and their views seem to be in harmony with those of funders, policymakers and some data providers. Researchers tend to perceive themselves as a virtuous group that conducts research to benefit the UK population, and who therefore should have access to patient data without frictions. Some groups of patients and the public have endorsed this self-identity. These factors have generated a growing and validated demand for data for research purposes, which has helped to drive the flow of patient data towards universities. The endorsement of policymakers, funders and data providers has become material in the provision of resources such as funding and infrastructure while the public support has prevented the emergence of opposition towards their work. The decisions of information governance staff act as frictions, as they have sometimes refused to share data, not accepting the virtuous self-identity of researchers as a justification to allow smooth data flows. Despite technology advances and investments, there are still infrastructural barriers and data management practices that slow down or block the movement of patient data to universities. While researchers recognise these factors can act as barriers, their belief in the promises of big data motivates them to try to improve the quality of datasets and solve infrastructural issues that act as frictions for the movement of data towards them. This study helps to understand the sociocultural values and norms within university-based research teams and how they interact with material elements to generate the socio-material conditions that create drivers and frictions that work together to shape the journeys of patient data reused for research purposes.