How local Trusted Research Environments can shape national data policies to streamline access to UK health data
The Ben Goldacre review, Better, Broader, Safer: Using Health Data for Research and Analysis, commissioned by the Secretary of State for Health and Social Care and published in April 2022, proposed a national data strategy to establish and codify large-scale or national Trusted Research Environments (TREs). Trusted Research Environments act as gatekeepers to researchers wanting to use routinely collected health data, allowing approved researchers to access, process, link and analyse health data, derived from NHS patient records, safely and securely.
The review claims that limiting smaller, local TREs will prevent duplication of infrastructure, information governance, privacy risks, monopolies, and will promote innovation, particularly with commercial partners.
However, as researchers and indeed the public are aware, data capture is inherently local. In the UK, health and social care data are captured by local GPs, hospitals and Local Authorities in local systems. There are local nuances, local data capture practices and local customisations to architecture and software applications.
Researchers Katherine O’Sullivan and Katie Wilde from the University from Aberdeen argue that any proposal for a ‘national data strategy’ requires local knowledge and expertise, held within local TREs, and that, if not carried out with due consideration, may impact on the success of a national strategy.
The Grampian Data Safe Haven (DaSH) in Aberdeen, Scotland, one of the UK’s many local TREs, is a well-established TRE accredited by the Scottish government and now in its 10th operating year. It holds over 50 local health and population datasets, and DaSH technology ensures healthcare, social care and other types of routinely collected and anonymised sensitive data, are made accessible for both academic research and clinical service evaluation and improvements.
DaSH has extensive experience and has already provided a valuable legacy of helping to improve health and wellbeing in Scotland and beyond. It enabled the delivery of large-scale multinational cohort analyses to advance healthcare research. It has provided artificial Intelligence algorithm training for use in clinical settings that incorporates imaging data and unstructured clinical free-text data. It links local authority and health data to improve outcomes for vulnerable populations.
But even more important than all of the ground-breaking research that is being carried out to improve the health and wellbeing of UK citizens, as a local TRE, DaSH can clearly demonstrate through the services it provides, its focus on innovation, collaboration and commitment to open research, and commitment to ensuring patient privacy, that bigger is not always better.
Katherine added, “The starting point of an effective national UK data strategy could be to focus on the needs of local communities. It is critical to bring together and engage with the well-established, local TREs within the UK to information-share existing infrastructure and architecture, information governance processes, collaborations and partnerships (including commercial), and to highlight innovations and transformative approaches already being undertaken within these data centres.”
Katherine O’Sullivan, Operational Lead, and Katie Wilde, Head of Digital Research, University of Aberdeen.
O’Sullivan, K. and Wilde, K. (2019) “A profile of the Grampian Data Safe Haven, a regional Scottish safe haven for health and population data research”, International Journal of Population Data Science, 4(2). doi: 10.23889/ijpds.v4i2.1817.