Health and Care Bill — House of Lords, 2022-02-09
Topic: Health
Timothy Francis Clement-Jones (Liberal Democrats, Centre to centre-left): I was not being discourteous, but I thank the Minister. We just go along the line of amendments It is a pleasure to follow the noble Lord, Lord Hunt, and my noble friend Lady Brinton. Of course, we all recognise the benefits of using health data which arises in the course of treating patients in the NHS for research that will lead to new and improved treatments for disease and for the purposes of public health and health service planning. It has been a great benefit in helping to improve the treatment of Covid during the pandemic However, the track record of the department and the NHS in protecting patient data has not been a glorious one. We have heard a few examples. Let us go back to December 2019 and the discovery by Privacy International that the Department of Health and Social Care had agreed to give free access to NHS England health data to Amazon, allowing it to develop advertising and sell new products, applications, cloud-based services and/or distributed software My noble friend Lady Brinton talked about the successful case brought by openDemocracy and Foxglove against the department over a Covid-19 datastore deal with big data firm Palantir Technologies for failing to consider the impact of the deal on patients and the public by a consultation and performing a fresh data protection impact assessment on a new deal Then, of course, we had the situation last year, mentioned by the noble Lord, Lord Hunt, which has been described as "the biggest data grab in the history of the health service" of GP patient data. I pay tribute to the campaigners, including a group of Tower Hamlets GPs who refused to hand over patient data. Ministers first announced that implementation would be delayed until 1 September, and then in a letter to GPs in July last year put the whole scheme on hold, including data collection After this bungled approach—the noble Lord, Lord Hunt, used the word "debacle", which is perhaps more apposite—more than 1 million people have now opted out of NHS data sharing. There is a deep worry here that the Government have learned nothing from the fate of the care.data project. The Government have now had to revise their approach, devise a simpler opt-out system and commit to the publication of a data impact assessment before data collection starts again. They have had to commit that access to GP data will be only via a trusted research environment and to a properly thought-through engagement and communications strategy Wade-Gery does acknowledge some of these concerns but if we are going to retain and build trust in the use of health data, we really need a clear governance framework. The Government must gain public trust through honesty, transparency and rigorous safeguards, and the individual must have the right to choose whether or not to share their data and understand how it will be used. I hope that NHSE—and, indeed, NHSD—will take on board the ICO’s recommendations in its audit report of NHS Test and Trace regarding governance and accountability and processor and third-party supplier relationship management, which looks at the policies and procedures that were introduced to keep data secure. There are some valuable lessons to be learned there As the noble Lord, Lord Hunt, has described, all health data must be held anonymously and accessed through an accredited data-access environment, designed to cover not only the promised trusted research environment but where data is used for planning purposes As to the detail of the amendments in this group, the noble Lord, Lord Hunt, has described them and the patient-centred intent behind them admirably. I will simply lay out the rationale for Amendment 305, tabled by me and supported, I am glad to say, by the noble Lord, Lord Hunt The data held by the NHS must be considered as a unique source of value held for national benefit. My noble friend Lady Brinton reinforced that. As it is, NHSE has refused to publish the list of projects and organisations to which it releases data. Retaining control over our publicly generated data, particularly health data, for planning, research and innovation is vital if the UK is to maintain its position as a leading life science economy and innovator Having read speeches by Ministers trumpeting the UK’s "new, bold approach to international data transfers", debated the UK approach to data sharing, particularly in the context of the passage of the Medicines and Medical Devices Bill and the Trade Bill, and seen the wording of new international trade agreements, such as that with Japan, I am not at all confident about the Government’s approach to this. Emphasis in coverage of the UK-Japan agreement was placed upon championing "the free flow of data" Health data in particular amounts to a significant national asset or resource with the potential to function as a dynamo in relation to research, innovation and the continued growth of the life sciences, health and care sectors It seems that the Government recognise this, but by the same token, we need a guarantee that our health data will be used in an ethical manner, assigned its true value and used for the benefit of UK healthcare. Any proceeds from data collaborations that the Government agree to, integral to any "replacement" or "new" trade deals, should be ring-fenced for investment in the health and care system with a sovereign health fund. It should have governance mechanisms, such as those set out by the Ada Lovelace Institute in Exploring Legal Mechanisms for Data Stewardship last year. Those are the right foundations for health data governance and that is why I have tabled Amendment 305A I am not greatly reassured by the recent announcement by the DCMS of the creation of the International Data Transfer Expert Council; it looks rather as though data protection will be low on its list of priorities.