Moving away from the strong body of critique of pervasive ‘bad data’ practices by both governments and private actors in the globalized digital economy, this book aims to paint an alternative, more optimistic but still pragmatic picture of the datafied future. The authors examine and propose ‘good data’ practices, values and principles from an interdisciplinary, international perspective. From ideas of data sovereignty and justice, to manifestos for change and calls for activism, this collection opens a multifaceted conversation on the kinds (...) of futures we want to see, and presents concrete steps on how we can start realizing good data in practice. (shrink)

Digitalisation of health and the use of health data in artificial intelligence, and machine learning (ML), including for applications that will then in turn be used in healthcare are major themes permeating current UK and other countries’ healthcare systems and policies. Obtaining rich and representative data is key for robust ML development, and UK health data sets are particularly attractive sources for this. However, ensuring that such research and development is in the public interest, produces public benefit and preserves privacy (...) are key challenges. Trusted research environments (TREs) are positioned as a way of balancing the diverging interests in healthcare data research with privacy and public benefit. Using TRE data to train ML models presents various challenges to the balance previously struck between these societal interests, which have hitherto not been discussed in the literature. These challenges include the possibility of personal data being disclosed in ML models, the dynamic nature of ML models and how public benefit may be (re)conceived in this context. For ML research to be facilitated using UK health data, TREs and others involved in the UK health data policy ecosystem need to be aware of these issues and work to address them in order to continue to ensure a ‘safe’ health and care data environment that truly serves the public. (shrink)