Int J Popul Data Sci. 2023 Mar 16;4(2):1817. doi: 10.23889/ijpds.v4i2.1817. eCollection 2019.
ABSTRACT
There has been a recent emphasis to establish and codify large-scale or national Trusted Research Environments (TREs) in the United Kingdom, with a view to limit smaller, local TREs. The basis for this argument is that it avoids duplication of infrastructure, information governance, privacy risks, monopolies and will promote innovation, particularly with commercial partners. However, the work around establishing TREs in the UK largely ignores the long-established local TRE landscape in Scotland, and the way in which local TREs can actually improve data quality, solve technical architecture challenges, promote information governance and risk minimisation, and encourage innovation and collaboration (both academic and commercial). This data centre profile focuses on the Grampian Data Safe Haven (DaSH), a secure, virtual healthcare data analysis and storage centre located in Aberdeen, Scotland. DaSH was co-established by the NHS Grampian Health Board and University of Aberdeen to allow for the secure processing and linking of health data for the Grampian and Scottish population when it is not practicable to obtain consent from individual patients. As an established trusted research environment now in its 10th operating year, DaSH technology ensures healthcare, social care data and other types of sensitive data, routinely collected and used without individual patient consent, are made accessible for both academic research and clinical service evaluation and improvements whilst protecting individuals’ privacy at the local, national and international levels. DaSH has registered almost 600 projects and facilitated over 200 distinct research projects with data hosting, extraction, and novel linkages to completion. Ongoing innovation and collaboration between DaSH and the NHS Grampian Health Board continues to expand researcher access to new types of data and data linkages, introduce new technologies for advanced statistical research methods, and supports interdisciplinary research using population health and social care data for research, clinical and commercial advancements, and real-world practitioner applications. The purpose of this paper is to present DaSH’s data population, operating model, architecture and information technology, governance, legislation and management, privacy-by-design principles and data access, data linkage methods, data sources, noteworthy research outputs, and further developments in order to demonstrate the value of local TREs within the data management and access debate.
PMID:37671386 | PMC:PMC10476148 | DOI:10.23889/ijpds.v4i2.1817
