Baroness Finlay of Llandaff (CB)

My noble friend Lord Patel, in introducing this important debate, spoke about health data secure systems. I will speak about the Secure Anonymised Information Linkage system—the SAIL database—based in Swansea and funded by the Welsh Government, which runs on the mantra of “public data for public good”. It has been going for almost 20 years and has data reaching back a quarter of a century. The SAIL Databank was highlighted in the Health Data Research Service (HDRS) Digital Ecosystems Analysis report, because it has expertise in data pipelines, advanced data linkages and secure research infrastructure, powered by the Secure eResearch Platform, or SeRP. These capabilities are essential for the future of health data research. The SAIL database is very widely trusted, because it was so carefully set up and is so carefully managed. The report identifies it as one of the UK’s established examples, with “documented transformation logic and quality assurance” built in. The database has an extensive number of research projects internationally, and it reinforces the importance of trusted research environments, TREs, and secure data environments, SDEs, where approved researchers analyse sensitive data within secure settings, rather than downloading or transferring information. That model has maintained public trust while enabling high-impact research. Professor Simon Thompson, a co-director of the SAIL Databank and SeRP, has pointed out that they have been “recognised as a benchmark for the UK” and that their work linking “Welsh population data across health, education, housing, justice and beyond shows what’s possible when secure, person-level linkage is done properly and at scale”. It is one of the leading environments. Sharon Heys, the head of legislation and due diligence at SeRP, has discussed the difficulties in defining the lines of anonymisation and whether data is likely to be identifiable. I am grateful to my noble friend Lord Tarassenko for talking about the Biobank data. I had the privilege of being on the ethics committee as Biobank was being set up. The durability of Biobank and of SAIL represents the importance of considering all aspects before you even get started.