Health Bill (Fourteenth sitting)
It is a pleasure to serve under your chairmanship again, Dr Huq. New clause 6 raises an important question on how we govern health data, which one of the greatest assets of the NHS. The development of the single patient record platform and database, and the wider use of the linked NHS data, present enormous opportunities. When used responsibly, healthcare data can support much more personalised care, improve NHS planning, accelerate medical research, enable earlier diagnoses and help develop new medicines and treatments. It can also improve efficiency and strengthen the evidence base for healthcare decisions. However, those benefits can be realised only if the public have the confidence that their data will be used safely, ethically and transparently. Public trust must be the foundation of any successful health data policy. NHS health data is currently overseen by NHS England, following the merger of NHS Digital into that organisation. With the Government proceeding with the abolition of NHS England and the transfer of its functions elsewhere, it is right that we consider future governance arrangements. In principle, I agree that an independent body may be needed to ensure and maintain the security, integrity and responsible stewardship of NHS data. There is definitely scope for an independent body to oversee the management and regulation of the public’s health data. That proposal places patient privacy at its heart, and would strengthen safeguards against misuse, give patients greater control over how their information is used, and provide meaningful mechanisms to opt out of certain forms of data sharing. It also promotes the use of anonymisation and trusted research environments, allowing valuable research to take place while reducing the risk of inappropriate disclosure. We have discussed inappropriate disclosure by a malign actor, or even inadvertent disclosure, during debate on other clauses. The Liberal Democrat new clause also seeks to address a concern that has attracted significant public attention: where commercial organisations derive substantial value from NHS data, the NHS itself should share in that benefit. Although we did not support a number of Liberal Democrat proposals because of the inadvertent implications of their drafting, I still have sympathy with the overall thrust of what they were trying to achieve. There is a strong argument that the value generated from the data contributed by NHS patients should help to support future patient care and research. Transparency is another important feature. Publishing data-sharing agreements, increasing openness around decision making and consulting the public on significant new data initiatives would help to strengthen public confidence. The proposed trust would bring those principles together by overseeing data use, monitoring compliance with governance standards, ensuring transparency and, where necessary, suspending access for organisations that misuse their data. Of course, any new governance framework must avoid creating unnecessary bureaucracy or delaying important research. To reassure the Committee that the framework would not create a block or dampener, or insert inertia into the system, will the hon. Member for North Shropshire tell us what evidence she found when drafting the new clause? If we are going to do something like this, the oversight should be proportionate, and it should complement, rather than duplicate or frustrate, any existing regulatory responsibilities. Ultimately, the new clause has potential benefits. It would establish a clear social contract for NHS health data, which would hopefully protect privacy, support research and innovation, maintain public trust and ensure that patients and the NHS share in the benefits arising from the responsible use of a very valuable national asset. In terms of what it could be used for, that data is probably second to none in the world, but I am concerned about adding extra bureaucracy and inertia to the system, when we want a vibrant life-sciences industry that is able to use the data for the benefit of British citizens and patients. What does the hon. Member for North Shropshire think would happen in that case?