Health and Social Care (National Data Guardian) Bill

Baroness Walmsley Excerpts

2nd reading (Hansard): House of Lords
Friday 26th October 2018 Lords Chamber

[Baroness Walmsley (LD)]

My Lords, I thank the noble Baroness, Lady Chisholm of Owlpen, for introducing this important little Bill. From these Benches, we support it. Patient data is precious to each and every patient, and it is vital to the success of treatment that it is shared appropriately with those who have care of the patient. As the noble Lord, Lord Patel, said, it is also precious to the NHS as a resource for research into new treatments and for monitoring the effectiveness of existing treatments. As such, it has a value, which raises the ethics of how it is used by the NHS and others. These two aspects of data make it highly desirable that we have a person, backed by an office and adequate resources, who can establish best practice and ensure it happens.

I agree with the noble Lord, Lord Knight of Weymouth, about the importance of knowing that we have proper and accurate data collection to enable us to exploit the enormous potential of artificial intelligence. When I left university more than 50 years ago, I worked at the Christie Hospital reading cervical smears. My job is now done much faster and probably more accurately by a computer, and there are many other opportunities to speed up diagnosis and make it more accurate. That is one of the many reasons why this Bill is needed.

The measures that have been taken over the last few years, since the debacle of care.data, to protect patients’ data and privacy have been very helpful, and I hope this latest step will go a long way to countering the lack of trust in some quarters which followed the data breaches of the past. Fundamentally, to have confidence in the system, patients should be able to know how data about them is used. That is necessary if the NDG is to be meaningful.

Currently, many patients who want to see how data about them is used go to theysolditanyway.com. While it has a very negative title, it is not an official NHS site. The launch of the new NHS app would be a great opportunity for the NHS to make full and accurate information available to every patient. Patients understand how important it is that their data should be shared appropriately between health and care workers who are providing services to them. Indeed, it is highly desirable that all who have care of patients have relevant information on which to act. We have all heard of cases where this has not happened. I hope the Minister will be able to assure us that, with the safeguards that will be in place when this Bill becomes an Act, the quality, capacity and interoperability of IT provision in the NHS and care systems will be up to the job.

However, patients are perhaps less aware of the value of anonymised data to researchers. Without access to it, medical research would be put back a long way. The first figures from the national data opt-out designed by the National Data Guardian are now available. They show that while hundreds of people made a consent choice each month using the online service, thousands of people did it at their GP. The latter option has now been taken away by Department of Health and Social Care. Is this the Government’s idea of a successful digital service? Is it not vital to have an effective public information scheme so that patients understand the issues surrounding their consent, what is being done with their data and how to make their choice? The figures suggest that that has not been done so far, but it is early days.

I hope that when the Bill becomes law the Government will be making an effort to explain to patients how their information is being protected and why they can now have confidence that when they allow their data to be used it will be done in an efficient and ethical manner in the interests of all patients now and in future.

Turning to specifics, I think it is welcome that the NGD may not only issue statutory guidance but provide help and information to assist health and care organisations not just to comply but to achieve excellence in the way they handle patients’ data and any constraints on their use of that data in generating income. Clause 4 provides that the Bill extends to England and Wales only. However, the Bill’s Explanatory Notes state that Clause 1, which provides for the NDG to publish guidance and give advice, information and assistance, applies only in relation to the processing of health and adult social care data in England. Given that health is devolved in Wales, can the Minister please explain this for the record as it has been explained to me behind the scenes?

I turn to the issue of cost. The Explanatory Notes state that the Bill may result in some,

“implementation costs for the bodies and individuals required to have regard to the Data Guardian’s published guidance, in that they will need to review and assess the relevance of the guidance”.

Given that NHS trusts, GPs, local authorities in respect of adult social care and so on are all under financial stress, what is being done to provide for these costs? It is not just a matter of assessing the relevance of the guidance, as the notes say; there may be a need to put in place new systems for ensuring that they are compliant with the guidance, and that also has a cost.

In Committee in another place, Chris Bryant MP made the point that MPs often have confidential information about constituents’ health given to them willingly by the patient when asking for help or making a complaint about their treatment, and that sometimes applies to Peers too. He asked whether the NDG would be able to advise MPs about the handling of this data even though they are not covered by the Bill. The answer from the Minister was not very helpful: she said she hoped health organisations would be open and helpful to their MPs about these issues. That is all very well, but it did not give Mr Bryant the assurance that he was seeking about help and guidance for Members, so can the Minister do so now?

Having asked these various questions, I assure the Minister that we on these Benches are very supportive of this mainly uncontroversial Bill.