Building infrastructure is key to unifying UK health data
BMJ 2024; 387 doi: https://doi.org/10.1136/bmj.q2735 (Published 10 December 2024) Cite this as: BMJ 2024;387:q2735- Jessica Morley, postdoctoral research associate1,
- Luc Rocher, lecturer2
- 1Digital Ethics Center, Yale University, New Haven, Connecticut, USA
- 2Oxford Internet Institute, Oxford, UK
- Correspondence to: J Morley jessica.morley{at}yale.edu
Reforming the NHS by shifting from analogue to digital, from treating sickness to prevention of disease, and from hospital to community care is a priority for the UK government.1 Better use of data will be central to achieving these shifts—revealing who is likely to become unwell, enabling predictive modelling, and simulating the effects of changing the location of care. The November 2024 publication of the Sudlow review of the UK’s health data systems2 is therefore timely. Commissioned by the chief medical officer for England, the review makes recommendations for overcoming barriers to linking and sharing data by streamlining control; standardising mechanisms, governance policies, and public engagement activities for data access; and broadening access to imaging and free text data.
Currently, the UK’s health data infrastructure is outdated3 and fragmented, with datasets siloed across multiple locations4 and controlled by different entities that make inconsistent decisions about access.5 This slows down research and undermines public trust.
Three tensions
Infrastructure needs to be consistent and better coordinated. Yet recommendations in the Sudlow review for creating “critical national infrastructure” over-rely on bureaucratic …
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