Baroness Murphy (CB)

My Lords, I take this opportunity provided to us by the noble Lord, Lord Patel, to talk about the data for research for the greatest health challenge of our time—dementia. We need to improve the quality, accessibility and use of dementia data to support research, which is in an extremely poor state. We identify people too late, if at all. There is poor follow-up and data linkage, and difficulty matching people to the right trials. One problem is that people get referred to memory clinics over here, often remote from hospital services there. That is good for access, but where there are no links to research organisations, diagnosis is rarely followed up and, if you have a mild problem, you are never seen again. There is a wholesale lack of understanding that if you wish to research dementia, you need to understand that social care services, both statutory and independent providers, are where the subjects are. Coding is inconsistent. Data is often unusable. Those eligible for clinical trials are invisible to research, so recruitment to trials is very low indeed. Over the four years from 2021 to 2025, dementia trials recruited only 551 participants, compared with 24,000 in cancer. The UK has strong basic sciences, major data resources, early phase trial capability and a trusted regulatory environment. However, the science is moving rapidly, and while the UK now has a major opportunity to build on these strengths and become a global leader in dementia research, we are very constrained by the lack of national leadership to align the science, diagnostics and trial delivery. We are even further away from the NHS adopting results and realising the full value of government investment. Governments since the early 1920s have done some very positive things. The Dame Barbara Windsor Dementia Goals programme in 2022 and the Medical Research Council’s £20 million investment into a dementia trials accelerator were excellent initiatives, but we need to go further and faster. Does the Minister agree that we should use the modern service framework to improve the quality and usability of dementia data and ensure that people are not lost to research after diagnosis? BARBARA is the brain ageing registry for biomarkers, access to trials, research and adoption—it is a marvellous name; I would love to know who thought that up. Surely the Government should make BARBARA a government priority by 2030. I ask for that to happen.