Data Protection Bill [HL] — House of Lords, 2018-05-14
Topic: Health
Thomas Ashton (Conservative, Centre-right): My Lords, I feel a lot of sympathy for the noble Lord, Lord Mitchell, and commend what he is trying to do. I think that I shall be able to reassure the noble Lord, Lord Clement-Jones, that we are not as far apart as he might think. The noble Lord, Lord Mitchell, raised with great enthusiasm the point that we should ensure as a country that we use our rich resources wisely. We share his excitement about the huge potential of big data to improve health and care. We acknowledge that, if we leverage these data to their full potential, that will have huge positive impact in improving care, giving people greater control, enabling the system to plan better and target support and treatments to those who can benefit, and it will transform our already world-leading life sciences industry Nevertheless, in the judgment not just of the DCMS but also the Department of Health and Social Care—I know that the noble Lord has been speaking to my noble friend Lord O’Shaughnessy, on this subject—Amendment 53B risks undermining the work already being done in this space. NHS England, the Department of Health and Social Care and the Office for Life Sciences are already undertaking a programme of work that looks seriously at the public benefits that can be derived from NHS data. They are committed to working with representatives of the public and industry to explore how to maximise the benefits of health and care data for patients and taxpayers. In doing so, it is vital that service users and patients are involved every step of the way. They will accept and support the use of their health data only if they understand how and why their information is being used and how everyone will benefit. We must take the public with us on this journey, rather than imposing a code now My noble friend Lord O’Shaughnessy and his ministerial colleagues at the Department of Health and Social Care have made a written commitment to keeping the noble Lord, Lord Mitchell, involved in future discussions about this work. He will make a valuable contribution with his expertise in this matter, ensuring that we maximise the value in these datasets I want to answer straightaway and head-on the point about why the Government should not consider that we extract the full value of the taxpayers’ data. Of course, it is absolutely right that public sector bodies should be aware of the value of the data that they hold, but that value can be extracted in many ways, not solely through monetary means. For example, sharing health data with other companies that analyse that data may lead to a deeper understanding of diseases and potentially even to new cures. That is why we want to take some time to explore this important issue fully and try to find the most appropriate solution, should one be needed, rather than tying ourselves to one approach now. That was raised in the other place when this issue was discussed by amendments from people who are very concerned about how health data are being treated. As I said before, we have to be very careful, particularly when talking about health data, how we use datasets when people have given their information on the basis that it is anonymous and is extremely sensitive The noble Lord, Lord Freyberg, rightly broadened the issue a bit from just health data. He asked how much data we are commercialising, at home and abroad, and to whom. He suggested that bodies other than central government should take charge of a process for measuring and tracking these flows of significant data. The noble Lord, Lord Clement-Jones, mentioned the Centre for Data Ethics and Innovation. A body exactly such as that can, in this very fast-moving area, consider the balance between the need to protect an individual’s anonymity and the sensitivity of their data, and that data’s monetary value and use for things such as curing disease The noble Baroness, Lady Jones, made some interesting remarks about how information would be abused by the Government and the broad powers we have taken in the Bill. I remind her that the GDPR, which takes effect directly on 25 May, is exactly about protecting data subjects’ rights. For example, it allows data subjects the rights of rectification and erasure. The point about subject access rights is to allow individuals to have more protection than they currently do. The Bill brings some of those rights and extends them into areas which are not even covered by EU competence. I do not agree with the noble Baroness that we are abusing the powers.