UK Parliament / Open data

Health and Social Care (National Data Guardian) Bill

My Lords, I am very pleased to support the Bill. It is a simple Bill, which has been a long time coming. I pay tribute to two friends: Jo Churchill and Dame Fiona Caldicott, both of whom I know

extremely well. Dame Fiona Caldicott has been a staunch guardian of the public interest so that patients can have confidence that whenever their data is kept and used, it is secure and used responsibly and transparently. In 1997, after her first review, she established what became known as Caldicott Guardians in every hospital in the land. As somebody who was involved in the use of patient data at that time, I can tell your Lordships that you had to satisfy the Caldicott Guardians—they were no pushover. They were there to make sure that patients’ data was used appropriately and responsibly and that the purpose was clear. It is because of this that all the professional bodies—the royal colleges, the GMC, the researchers and research organisations, and all others—back the Bill.

It is a simple Bill. It is necessary to put on a statutory basis what has been working extremely well on a non-statutory basis. Following the disestablishment of the national governance board, there was no statutory body to be the arbiter and the guardian of patient data. Putting the National Data Guardian on a statutory basis will provide that. As has been laid out clearly and in detail by the noble Baroness, Lady Chisholm, it is there to give guidance and help and to work on behalf of patients and the public so they can have confidence that the data about them or their health is used appropriately and for a clear purpose. This becomes even more important as we go further in using data to develop genomic information to improve healthcare and to develop things such as artificial intelligence for diagnosis. The National Data Guardian will therefore have an extremely important role to play.

I support what the noble Baroness, Lady Chisholm, said: we must not confuse the Bill with taking over any of the role of the Information Commissioner, or, for that matter, the Data Protection Act. This is completely different from them. It is focused on health and care data—how it is used and who is the guardian of that information in the public interest. I strongly support the Bill and hope that we will not hold it up in any way whatever. It would be a great pity if the Bill failed because of some misunderstanding of what it is all about.

10.20 am

Type
Proceeding contribution
Reference
793 cc1066-8 
Session
2017-19
Chamber / Committee
House of Lords chamber
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