IJPDS International Journal of Population Data Science

A paper from the University of Dundee explains how secure access to patient data is enabling life-saving medical research across Scotland, the UK and beyond, while maintaining strict safeguards around privacy and public trust.

Published in the International Journal of Population Data Science (IJPDS), the paper profiles the University’s Health Informatics Centre (HIC), a resource that supports researchers in safely using routinely collected health data for public-benefit research. Working in partnership with NHS Scotland health boards, HIC manages data covering a fifth of Scotland’s population, spanning more than 20 years and 170 datasets containing records from approximately 2.1 million people. Since 2004, HIC has supported over 1,000 projects, contributing to more than 400 research studies focused on improving patient care, healthcare delivery, and population health.

Dr Laura Ward from HIC said, “Behind every electronic health record is a person, and at HIC we never lose sight of that. By protecting patient privacy while supporting responsible data re-use for public good, we enable research that delivers real-world impact and ultimately changes lives.”

Every interaction with the health service generates data — from hospital admissions and prescriptions to blood tests and diagnostic imaging. The paper explains how HIC securely curates, links, and manages this information, making it available to approved researchers through its Trusted Research Environment (TRE). This ‘secure-by-design’ computing platform allows de-identified data to be analysed without being removed or exposed, ensuring patient confidentiality is always protected, in line with the ‘Five Safes’ principles.

Three major data hubs are highlighted. Firstly, the UK-wide Alleviate Pain Data Hub addresses unmet needs in chronic pain research using a common data model to support standardisation. HIC also hosts large-scale clinical imaging datasets, including MRI, CT and X-ray, that can be securely linked to health records. Lastly, the Scottish Health Research Register and Biobank (SHARE) provides access to more than 300,000 volunteers, alongside biological samples and linked health and genomic data.

HIC combines service delivery with research-led innovation. This close integration ensures operational processes evolve alongside emerging methodologies such as artificial intelligence, machine learning, advanced analytics and cloud computing. An in-house software development team supports both research and services work, alongside a commitment to open science through the release of open-source tools and resources.

Looking ahead, HIC plans to continue investing in specialist teams, collaborative partnerships and the integration of research insight into practice — ensuring that secure data use delivers lasting benefits for patients, populations and healthcare systems across Scotland and beyond.

 

Click here to read the full article

The HIC Senior Team, Health Informatics Centre, University of Dundee, Scotland, UK

Ward, L., Johnston, J., Milburn, K., Hall, C., Jones, C., Guignard-Duff, M., Krueger, S., Milligan, G., Hampton, J., Walls, R. and Cole, C. (2023) “The Health Informatics Centre: a Regional Safe Haven and Trusted Research Environment Enabling World-Leading Research”, International Journal of Population Data Science, 8(6). doi: 10.23889/ijpds.v8i6.3320.