To ask Her Majesty’s Government what assessment they have made of compliance by the National Health Service with (1) the General Data Protection Regulation, (2) the Data Ethics Framework, and (3) the code of conduct for data-driven health and care technology, in relation to external providers.
My Lords, the Government are optimistic that thoughtful use of data can improve outcomes, but we are determined to protect the interests and rights of patients. That is why the Department of Health and Social Care has introduced a code of conduct based on the GDPR and the data ethics framework. Last year, we assessed the compliance of some external providers. Based on that information, NHSX is developing a new digital health technology standard against which NHS providers will be assessed, and enforcement will be by the Information Commissioner’s Office.
My Lords, I hope that the Minister has been celebrating Data Protection Day today. We received very similar assurances during the passage of the Data Protection Bill but we now know that GP patient data is being sold by the Department of Health and Social Care’s Clinical Practice Research Datalink to major US pharma companies. We have the handing over of NHS health data to Amazon for nothing, it seems, and now O2, owned by Telefónica, has been given free access to NHS mental health records. What transparency is there about any of those transactions? What open assessment is there of the public benefit, the sources of the data, and the price, if any, paid by these pharma and tech companies? I hope the Minister accepts that, unless we get this right, we will massively lose public confidence in the NHS and its safeguarding of data.
I wish all noble Lords a happy Data Protection Day, and it is a wonderful day to celebrate it. On the questions raised by the noble Lord, I reassure the House that the Government are absolutely concerned about the interests of patients and patients’ concerns about their own data, but the frameworks that have been put in place by the Government guarantee both transparency and the confidentiality of the data. The data shared with Amazon is freely available. It is provided through an API to 2,000 firms and does not represent anything like the confidential data implied by the noble Lord. Regarding O2, the data has not left the servers of the Birmingham and Solihull trust and it is not being used outside the remit of the pilot arranged by that project.
My Lords, the NHS patient database holds the medical records of 65 million people and has an estimated market value of £10 billion. We know that it is a huge asset for the country. What is the Minister doing to ensure that this value benefits the NHS, patients and the future development of treatment and services, rather than boosting the wealth and profits of the global companies currently bidding for lucrative NHS data contracts?
The noble Baroness is absolutely right to emphasise the value of the data. We are blessed in Britain with one of the largest datasets in the entire world. Enormous work has been put into crafting the frameworks, ombudsmen, regulations and oversight necessary to make best use of this data. The Government are investing in projects such as the NHS artificial intelligence lab, which will put government money to work. We are working with partners who will share income from the use of this data.
My Lords, I declare my interests as set out in the register, including as a board member of Health Data Research UK. Data sharing between the public and private sector has always gone on in the NHS; there would be no clinical trials if that were not true. However, with new technology it is important that that data is shared not just in a safe, legal and ethical way but, as the noble Lord, Lord Clement-Jones, pointed out, in a way that continues to enjoy the trust of the public. Having the public deeply involved in setting the strategy and parameters for the kind of data sharing that goes on is absolutely essential. Can my noble friend the Minister reassure the House that, as well as legal compliance, investment of capital and all the rest of it, the Government are taking this issue very seriously? As an example of using citizens’ juries and other methods to build that confidence, I commend to him the One London programme. I have no involvement in it myself, but it is doing an exemplary work in getting people not only involved but setting strategy.
The noble Lord, whose experience in this matter far outweighs mine, hits upon an incredibly important point. Public trust is essential in this area. Public awareness of the use of data remains very low and recent polling evidence suggests that engagement is not at the level that is needed. This represents a danger that the Government recognise, which is why we are doing everything we can to educate the public on the use of their data and to ensure that our partners are utterly explicit about the way in which data is used.
My Lords, in response to an earlier question, the Minister mentioned that income would be derived from the sharing of data. Does he have an estimate of how much of this income would be derived for the next financial year and—probably more importantly—to what use the money would be put, whether ring-fenced for the health service or put into general income?
The noble Lord asks an excellent question but I am afraid that those statistics are not available in my wonderful briefing. I will try to track down the numbers and write to him with whatever information is available.
My Lords, the Conservative manifesto promised a good expansion of data sharing across government. We all know that there are many advantages of doing that, as well as the need for a number of safeguards. If, for example, the health and medical records of Windrush people had been available to the Home Office, it might have been easy to establish how long many of those people had been in the country. Does the Department of Health have clear rules about the sharing of public data with other departments?
The arrangements for sharing between departments are overseen by the Information Commissioner. The rules are set by a combination of the digital health technology standards set by NHSX and guidance given to practitioners through the data security and protection toolkit. These provide the rules for inter-departmental sharing; I would be glad to provide copies to the noble Lord if that would be helpful.
My Lords, what framework and governance mechanism do the Government have in place to share the 100,000 Genomes Project information with pharmaceutical companies to develop targeted drugs?
I am afraid I do not have those precise arrangements to hand. I would be glad to track them down and write to the noble Lord.