Baroness Brinton (LD) [V]

My Lords, it is a pleasure to follow the noble Baroness, Lady Murphy. I congratulate the noble Lord, Lord Patel, on securing this debate. As an obstetrician, clinical teacher and academic, his exceptional work for well over 50 years has reduced the risks to women in pregnancy and childbirth. I am sure that patient data will have been key at every stage and contributed to the life-saving and life-changing therapies and treatments. From these Benches we are clear that patient data must be available for medical research. I thank the Alzheimer’s trusts and others for their briefings on the real progress in treating diseases as well as the hopes for future research. I especially thank the Cystic Fibrosis Trust. My dear childhood friends, Julie and Vivienne Gastor, both had CF. All their lives they took dozens of tablets every day to mitigate their symptoms. In the early 1960s there was no hope of tackling the underlying disease and, as they and we knew would happen, they died as teenagers in the early 1970s. These days, using patient data, eligible people with cystic fibrosis can receive new drugs that treat the underlying causes by targeting the faulty CFTR protein. A partnership involving the CF registry collects evidence on their effectiveness in routine care before NICE appraises the therapies. This has meant that people with CF are able to access the new drugs while effectiveness data is still being gathered. What a life-giving transformation. However, we have also heard in the debate today of concerns about the wider use of patient data, especially regarding AI. It is prescient of the noble Lord, Lord Patel, to have called this debate before your Lordships’ House starts to consider the Government’s health Bill. The BMA has told us about threats to the common-law duty of confidentiality of patient data—that patient data can be used beyond the narrow protections available for use in academic research studies, that data functions would move from NHS England to the Secretary of State. This is not the first time that a Government have tried to change the data protection for patients regarding their own personal and medical data. From these Benches, we will challenge the Government to keep the research black box protections which my noble friend Lord Clement-Jones and I negotiated, with Labour support, during the passage of the Health and Care Act 2022. We will do this because—this gets to the heart of today’s debate—the vast majority of patients, doctors and academics believe that it is vital that patient medical data is made available for medical research but, and this is key, with the data securely, appropriately and strongly anonymised and pseudonymised.