Health Data: Research and Analysis

Question

Asked by

To ask His Majesty’s Government what progress they have made in implementing the recommendations of Professor Ben Goldacre in his report Better, broader, safer: using health data for research and analysis, published in April 2022.

My Lords, the Government responded to the Goldacre review with Data Saves Lives, a data strategy which addressed the majority of the review’s recommendations. Over two-thirds of the strategy’s commitments have been delivered, many of which act on the Goldacre review’s recommendations. A significant proportion were centred on adopting secure data environments—SDEs. There has been significant progress on adopting SDEs in England, including significant investment through the data research and development programme.

I thank the Minister for his helpful reply. I am still concerned that there has been a loss of momentum in this fast-developing field, with the development of AI over the past two years since the report was produced, as well as the discussions under the Data Protection and Digital Information Bill. Can the Minister assure me that there will be a review of this work to see what has to be updated? Will he discuss, with his ministerial colleagues, what lessons can be learned and taken into account in producing the Data Protection and Digital Information Bill?

My Lords, the noble Lord is right to push the Government on this, and I pay tribute to the knowledge he brings to this House on this important subject. I reassure him that the Goldacre principles inspire our ongoing work to ensure that data for research is used in an ever more secure and transparent way. Secure data environments are a major change in the way data is made available for research, and it remains a government commitment to implement their use. SDEs protect personal medical data, as it can be accessed only by verified researchers. The NHS can monitor data usage, and we can limit the data that is analysed and control the purposes for which data is used. Research must always have ethical approval and be in line with UK GDPR.

My Lords, I welcome the introduction of a secure data environment in the NHS, but can my noble friend the Minister give assurance to the House that the federated data platform, and the approvals of access to it, are in line with that and with the authorisation given to individuals? We are well aware of some of the data breaches that have happened in the NHS with patient confidentiality in the past.

My noble friend raises a very important point, and I reassure her and the House that only authorised users will be granted access to data for approved purposes. These include NHS staff and those supporting them, such as administrators, bed managers or care co-ordinators, as well staff in social care supporting the move from hospital care. The FDP suppliers can use NHS data only to support NHS services directed by NHS bodies. The suppliers will not control the data on the platform, nor will they be permitted to access, use or share it for their own purposes.

My Lords, the Government deserve credit for supporting the development of secure data environments such as OpenSAFELY, but a lot of health research data is still moving around using older and less secure environments, and those who are seeking unauthorised access are becoming ever more sophisticated and dangerous. Will the Minister go back to his department and get it to prioritise, with urgency, moving health research from these older and less secure systems to the newer and more secure ones? This is a race against time, and a major data breach would set research back by years.

The noble Lord raises an important point, backing up the concerns of the noble Lord, Lord Davies. He is exactly right: the Government are moving at pace. I reassure him that I will take his request back to the department.

My Lords, one particular recommendation in the report should also be prioritised: addressing the problem of 160 trusts and 6,500 GPs all acting as separate data controllers, and doing this either through a national organisation acting as a data controller or through a TRE. This would obviously improve the flow of data and the availability of it for direct care and research. Can the Minister please take this matter away and act as swiftly as possible, as this has been on the desks of successive Ministers for some years now?

I am grateful to my noble friend. I hear what she says, and I will certainly take that back to the department.

My Lords, following that question, one of the major problems in gathering this vital data for research is that general practitioners are careful about it and are limiting its availability. They feel that they cannot betray the confidentiality of their patients. What encouragement can we give to GPs that they can release this important data?

I am not aware that GPs are withholding such important data. If the noble Lord knows of any evidence, I ask him to let me know. I reassure the noble Lord, and indeed the House, that the Department of Health and Social Care and the NHS in England have committed to transforming how NHS health and social care data is made available for secondary uses. Secure data environments allow data to be accessed for research in secure systems without people’s identifiable information being seen or the data having to be sent between individuals. If the noble Lord has any specific cases, I ask him please to write to me.

My Lords, the NHS dataset has been allocated to raise over £5 billion per annum by commercial organisations, if used appropriately. What provision are the Government making to ensure that the public also benefit from this £5 billion by potentially setting something up that is equivalent to a sovereign wealth fund to be invested for public use, particularly for health?

The noble Lord knows how to run a hospital, and I pay tribute to the work that he has done. On the point about a sovereign wealth fund, I shall take it back to the department—but this strategy will give the public greater access to and control over their own records. Healthcare staff will have easy access to the right information, and social care leaders and policymakers will have data to make effective decisions —so the noble Lord will know that the strategy will benefit all those who work in the NHS, but particularly it benefits patients in the United Kingdom.

My Lords, the Lords Committee on the Integration of Primary and Community Care heard more frustration from witnesses on the inadequacy of data connectivity than almost anything else. What plans do the Government have to improve that situation, sooner rather than later?

The whole point of the government strategy with introducing this data is to improve the connectivity, similar to what the noble Lord was referring to, between GPs and primary care, and indeed into those ICBs and the trusts throughout the country. I totally agree with the noble Baroness on doing it sooner rather than later, but the Government are moving at pace, and this strategy will transform patient outcomes throughout the United Kingdom.