Lord Mair (CB)

My Lords, this House’s Science and Technology Committee, which I chair, has been investigating innovation in the NHS, including the use of patient data for research. We expect to produce our report in the next few months. There is no question that the UK has unique and exceptionally rich health data. Better use of it would save lives, benefit the NHS and grow the economy. However, enabling access to this data for research has been a long-term policy problem. Professor Cathie Sudlow’s review warned that access is in danger of going backwards since the pandemic. The £600 million Health Data Research Service, the HDRS, is intended to help address this. It has the potential to be transformative, but there are two key areas of concern: funding and public trust. First, on funding, after its initial five-year budget period the Government have set a target for the HDRS to be self-funding through commercial partnerships. But since there is not yet clarity around which services it will offer, what its expenditures will be and what prices it will charge, we cannot assess whether this is realistic. High access fees on existing health data research projects already lock out life sciences SMEs and could push researchers overseas, where they could access health data more easily. The self-funding model risks the HDRS ending up dependent on large pharmaceutical companies just to maintain its operations. Could the Minister explain how and why the department decided that the HDRS should be self-funding, and will she publish the analysis behind that? Secondly, there is the question of public trust. Its importance has already been referred to by my noble friend Lord Patel in his excellent opening speech and by other noble Lords. There is a long list of well-meaning policy initiatives to enable access to patient data, including care.data and the GPDPR, which were undermined by a loss of public trust. Public support for using health data for research is real but conditional—it is undoubtedly weaker when it comes to commercial uses. Trust cannot be assumed. It has to be earned through transparency, clarity about how data is used and visible, tangible benefits to patients. Can the Minister tell us how the HDRS will become a trusted data custodian? What safeguards will it use for patient data and how is it going to engage with the public? I hope the Minister will tell us how the HDRS will address these important issues about funding and public trust. It is vital to ensure that we can realise the immense opportunity offered by full use of patient health data.