Lord Davies of Brixton (Lab)

My Lords, I very much thank the noble Lord, Lord Patel, for introducing this debate. I very much agree with the points he made and I hope the answers will be forthcoming. Clearly, I support the use of patient data for research; the benefits from medical innovation, prevention and treatment are substantial. But I want to focus on a narrower issue: the gap between what we know about public opinion and how policy responds to it. The evidence consistently shows strong public support for the use of health data in research, yet the same evidence also shows continued concern about how data is handled and, in particular, the role of private companies in accessing and using that data. These concerns are acknowledged in many reports but are too often treated as secondary. This is especially important for mental health data. Research indicates that willingness to share mental health information remains high and differs only marginally from willingness to share physical health data. However, trust is critical. People’s confidence depends not simply on whether data is used but on who is using it and for what purpose. For those with stigmatised conditions, the consequences of any misuse or breach can be profound. Recent events have demonstrated that public confidence cannot be taken for granted. I was not going to mention UK Biobank, but since it has been mentioned, I hear the defence clearly. I am a fan of it and a participant in it, but that case illustrates the problems we face, because once trust is lost participation may decline, undermining the very research that depends on public co-operation. I therefore ask the Minister two questions. First, will the Government consider establishing a standing oversight body with substantial patient representation to review access to particularly sensitive categories of data, not least on mental health, and to publish the reasons for its decisions? Secondly, where commercial organisations benefit from access to NHS data, what steps will the Government take to ensure that the knowledge gained is returned to the NHS and to patients?