Our Beyond Data theme examines how data are changing the epistemic, social, ethical, legal, and economic relations of biomedicine. Theme SummaryModern biomedicine involves the collection, storage, and sharing of vast quantities of data, both biological and from human subjects. The methods of combining and analysing those data grow ever more complex, as does the infrastructure to manage and circulate them. Medical practice and research alike are increasingly entangled with and shaped by these new ways of working with data. These developments are transforming medicine in ways that remain inadequately understood.The Beyond Data theme examines the proliferation of data practices and the nature and purpose of data for biomedical knowledge. To do this, we explore the ethical and legal ramifications of working with data that derive from real people. This helps us to gain a greater understanding of the social and economic processes driving developments in data, health innovation, and biomedicine.Our core research questions include:What does it mean for medical practice or health policy, for instance, when the objects of biomedical knowledge exist as much in silico as in vivo?What benefits and risks arise from the circulation and use of personal data; how are they distributed; and how can we ensure that they serve the ends of justice and social good? How does the growth of biomedical data relate to the interests of different constituencies, including patient groups, governments, and commercial companies? Engagement and OuputsEpidemiology beyond data: the Epidemy labEpidemiology has long been understood as a data-driven science, concerned with the surveillance of mortality and morbidity data to develop forecasts. Funded by an ERC Starting Grant, Lukas Engelmann, John Nott and Gladys Kostyrka explore the history of epidemiological reasoning beyond such narrow framing to ask how theoretical models, material infrastructures and social networks have shaped the field over the 20th century. The perspectives assembled in the project will unpack and address challenges related to digital epidemiology and digital phenotyping.Epidemy Lab updates and eventsThe data-care nexus in ‘learning health systems’ Our team develops public engagement and outreach events to explore how data and care are interlinked in a ‘learning health system’. With technological advances in the capture, storage and linking of routine digital healthcare data, medical work can be informed by more information than ever before. Data can be used to recognise patterns in patient outcomes and predict treatment success, making them potentially useful for both bedside care and research. Our team examines how big data and advances in clinical trial design are changing the culture of research and care across medical practice.How does a health system learn?Cultural probes for public engagementRegulation and data-driven innovationsData-driven innovation is a prime example of how rapidly evolving technologies present ethical, legal and social challenges. Such innovation raises important questions around oversight of data practices and ownership of data. Nayha Sethi, Steve Sturdy, and Marlee Tichenor explore these issues across health research, care and innovation. Dialogical design as a bridge for responsibility gaps in Trustworthy Autonomous SystemsRegulation of the production, storage, and distribution of genomic dataGlobal inequalities and statistical capacity to monitor Sustainable Development GoalsPersonal health apps and surveillance capitalismAndrea Ford and Giulia Di Togni undertake research on personal data collection via mobile health apps, particularly period tracking apps, as expressions of surveillance capitalism. This work appears across academic journals, newspapers, and community engagement, including original stand-up comedy shows as part of the Edinburgh Fringe Festival's Cabaret of Dangerous Ideas. This also includes talks and presentations at the annual UK-wide Being Human Festival and Edinburgh University's Science Insights Q&As.Hormonal health: Period tracking apps, wellness, and self-management within surveillance capitalismShould you worry about data from your period-tracking app being used against you?When tracking your period lets companies track you Theme leadsLukas EngelmannCatherine MontgomeryNayha SethiSteve SturdyResearchers and partnersGiulia De TogniJarmo De VriesGladys KostyrkaCristina Moreno LozanoJohn NottMarlee Tichenor This article was published on 2024-09-24
