Health Bill (Fourteenth sitting)
As my hon. Friend the Member for Isle of Wight East just said, new clause 6 seeks in essence to ensure that we have good data security and control, with which I agree. Trust is important, data security is important and supporting research with anonymised data is a good thing to do. What would the new clause do? First, it would establish an independent body known as a sovereign health data trust. In essence, that is a group of people who have been put together. The new clause does not say how big the group would be—I do not know whether the hon. Member for North Shropshire had its size in mind—but it describes a group of people with “a diverse range of backgrounds…and…health data experts, clinicians and patient representatives.” Are the first group intended to be laypeople, rather than experts? What does the hon. Lady mean by a “diverse range of backgrounds”? Does that relate to protected characteristics, or is she looking for a farmer from Northumberland and a lawyer from Islington, because they have different backgrounds? It is not entirely clear what she means, so I would be grateful if she clarified that. Additionally, however big that group is, who would decide how it is composed and by what criteria? Who would be responsible? The sovereign health data trust would be charged with creating a health data charter. That leads me to my second question: what is a health data charter? In essence, a health data charter—as defined in the new clause—must “set out the fundamental principles and responsibilities for assessing whether a data sharing partnership is in the interest of the public and the NHS”, and, as my hon. Friend the for Isle of Wight East said, “include the primary goal of protecting people’s privacy and their data from exploitation, while promoting trust in data systems and the handling of health data”. That is important, because we have heard in the media several examples of data being put up for sale or leaked, and the problems caused by that. The charter must also “ensure patients have control of their data, including providing relevant opt-outs”. I am glad to see that bit about relevant opt-outs. We have talked about the importance of the record being shared not as a whole, but in pieces. Things such as obstetric or sexual health ought perhaps to be consented to separately. Patient control of the data is important. How would the hon. Member for North Shropshire deal with safeguarding issues in the control of data, particularly in relation to children? The new clause sets out that the charter must “provide that all health data is held anonymously and accessed through a trusted research environment”— which seems reasonable—and must “set out ways to retain and protect the value of health data in England, including providing measures to invest a share of the income generated from new medicines or treatments developed with that health data to be invested back into the NHS”. Earlier this week, the hon. Member for Lichfield and I discussed the important value of the NHS data—I think he said that it was the most valuable dataset in the world, and he might well be right. I was a bit confused by that part of the new clause, because we talked earlier this week about the Health Services Safety Investigations Body being able to sell time and training and share expertise, including with private sector organisations overseas. The Government changed that in the Bill, so that they would only be able to retain costs and not make any money for the Treasury. When we put amendment 56 to a vote, the Liberal Democrats abstained. I do not know what the difference is between using NHS data for research and the HSSIB using their expertise for training overseas organisations. I would be grateful to understand that. The charter must be “designed in such a way to render it interoperable with the European Health Data Space”. The European Health Data Space regulations were introduced in March 2025. We are in a transition period, and they will be implemented in 2027 and 2029. It should be interoperable in technical terms “through the promotion of Findable, Accessible, Interoperable and Reusable (FAIR) data principles”. What is the European Health Data Space? Essentially, it is a single patient record for Europe. Its instructions say member states may—I underline the word may—offer “an opt-out option for the cross-border exchange of electronic health data under EHDS.” I do not understand the Liberal Democrats’ argument for that, because they have made a strong argument throughout Committee stage that data needs to be shared carefully. They advanced some clauses that will ensure that data is held in the United Kingdom and that we use British tech where possible. New clause 6 would make us interoperable with the European system and presumably move us towards European systems.