Lord Tarassenko (CB)

My Lords, I am authorised to speak on Motion 43A, as someone with regular day-to-day experience of scientific research. Since I started my PhD in 1981, I have had the privilege of spending more than half my working life doing scientific research in the UK—the last 20 years working with very sensitive patient data. Most of that research has been carried out in an academic setting, but some of it has been in collaboration with medtech, AI and pharmaceutical companies. This research has required me to become familiar with many three-letter and four-letter acronyms. Noble Lords will know about DBS, but they might not know about RSO, TRO, HRA, LREC, MREC, CAG, and IRAS, to name just a few. I have spent hundreds of hours working with clinical colleagues to fill in integrated research application system—IRAS—forms. IRAS is used to apply for Health Research Authority—HRA—approval for research projects involving the NHS, social care or the criminal justice system. I have appeared before not only medical research ethics committees, or MRECs, which test whether a research protocol is scientifically valid and ethical, but local research ethics committees, or LRECs, which consider the suitability of individual researchers and local issues. I was involved in a research project which reused data acquired from patients on a Covid isolation ward during the first two waves of the pandemic. That research project sought to understand how nurses interpreted continuous data from the clinical-grade wearables we used to monitor these high-risk patients during Covid. It took our research team more than 18 months to obtain the relevant permissions to reuse the data for our proposed analysis. Our application was reviewed by the Confidentiality Advisory Group—CAG—which provides independent expert advice on the use of confidential patient information without consent for research and non-research purposes. CAG already considers whether accessing the confidential data is justified by the public interest. Its advice is then used by the HRA and the Secretary of State for Health and Social Care to decide whether to grant access to the confidential data. The existing provisions in this country to allow access to data for research purposes are stringent, and it is entirely right that they should be. The UK is respected the world over for the checks and balances of its research governance. The relevant safeguards already exist in the current legislation. Adding a further public interest test will only increase the amount of bureaucracy that will inevitably be introduced by the research services offices, or RSOs, and the translational research offices, or TROs, of our universities, which are very good at doing this. The extra burden will fall on the researchers themselves, and some researchers may decide to concentrate their available time and energy elsewhere. This amendment, I am afraid, will have the unintended consequence of having a negative impact on research in this country, so I cannot support it.