Health and Social Care (National Data Guardian) Bill

Justin Madders Excerpts

3rd reading: House of Commons & Report stage: House of Commons
Friday 6th July 2018 Commons Chamber

[Justin Madders (Ellesmere Port and Neston) (Lab)]

I congratulate the hon. Member for Wellingborough (Mr Bone) on his success in making progress on this Bill in pretty quick time—as he candidly said, quicker than some other private Members’ Bills, which may well be down to the Government’s view on the merits of particular Bills. As the hon. Gentleman said, there are other Bills that we would like to see make progress, but that is not to detract from the merits of this one.

As I said when we last debated the Bill, the Opposition welcome the decision to put the National Data Guardian for Health and Social Care on a statutory footing. As we know, the use of data has the potential to improve every aspect of the NHS, from transforming the way in which we diagnose illnesses such as cancer to improving the patient experience by ensuring that every clinician at every stage has the complete picture. We know from experience that the use of data in the NHS can be controversial at times, and patients sometimes raise concerns. Those concerns are not unfounded.

Official figures show that more than 100,000 patients were caught up in NHS data blunders in 2016-17. The number of serious data incidents has doubled in a year and they are now occurring at a frequency of one every three weeks. It emerged last year that NHS Shared Business Services had failed to deliver just under 709,000 letters from hospitals to GP surgeries, with the correspondence being left in an unknown warehouse. Such examples show the importance of an effective, modern data protection system with robust safeguards, which is central to securing public trust and confidence in the NHS.

[Scott Mann (North Cornwall) (Con)]

The hon. Gentleman might or might not be aware, but in Cornwall we have a higher proportion of cases of glaucoma than any other place in the country, and we know no reason why. Does he agree that sharing information on that could help us to understand why some of these complex conditions occur? Does he also agree that when the Data Guardian is in place, they might be able to look at and break down the data to work out why some of these conditions exist?

[Justin Madders]

The hon. Gentleman is absolutely right that there are many variations in conditions and, indeed, outcomes throughout the whole country. The importance of data in establishing patterns cannot be understated.

[Chris Philp]

The British Heart Foundation recently said of the research environment that “too much” of its researchers’ time

“is taken up with unnecessary red tape and bureaucracy. The weight of this form-filling is slowing down vital discoveries”.

Does the hon. Gentleman share my hope that putting this role on a statutory footing will help to address such concerns?

[Justin Madders]

Whenever we speak to anyone in the NHS, particularly GPs, they express concern about form filling, but it is important that due processes are followed and that there is a clear audit line. I am sure that the hon. Gentleman can have a word with the Minister about what practical steps can be taken to deal with some of the British Heart Foundation’s concerns.

We support the establishment of a statute-backed Data Guardian because it is one way to improve confidence in the way data is used. As I said in Committee, we are concerned that the Bill does not include an absolute obligation for data controllers to act on advice—only to have regard to it—and there appears to be no requirement for organisations to state proactively how they have dealt with such advice. Responses to question 5 of the Government’s consultation were overwhelmingly supportive of such a provision. In that question, the Government proposed that

“organisations holding health and care data which could be used to identify individuals should be required to publish all materials demonstrating how they have responded to advice from the National Data Guardian.”

In their response to the consultation, the Government said:

“Responses were supportive of the proposal that the national data guardian should be given formal advice giving powers.”

That would certainly provide reassurances that the National Data Guardian will have real authority and act as an independent voice for patients. Without statutory backing, it is foreseeable that the National Data Guardian’s authority and independence could be undermined. Without a requirement for organisations that receive advice to provide evidence of their response, it could be difficult to be sure that the National Data Guardian is effective in doing the important job required by the Bill.

I am sure that Members will recognise that the requirement for a body to have regard to advice does not always mean that the body acts on that advice. We know that how clinical commissioning groups interpret the guidance of the National Institute for Health and Care Excellence leads to some variations in the way in which treatments are dispensed and that advice does seem to be ignored with impunity by CCGs.

I know that the hon. Member for Wellingborough does not see the need for additional powers to be handed to the guardian and does not want to see effectively a regulator, which is the road that my proposals may be taking us down, but it is important that, when the Minister responds, she gives us some indication as to what yardstick she proposes will be used to ensure that the concerns that I have set out will be effectively judged by the guardian.

In conclusion, although I have set out some concerns, we are not intending to oppose the Bill as it is currently drafted today.