Health and Social Care (National Data Guardian) Bill

Lord O'Shaughnessy Excerpts

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

[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord O'Shaughnessy) (Con)]

My Lords, it has been with great interest and pleasure that I have listened to the discussion on this important Bill, introduced by my noble friend Lady Chisholm, and I speak on behalf of the Government in support of it here today. I join other noble Lords in congratulating my honourable friend Jo Churchill on her efforts in introducing the original Private Member’s Bill and on being a mainstay in keeping attention on it after it fell at the last election; my honourable friend Peter Bone, who has worked closely with Jo and many others in the other place to get the Bill to this point; and my noble friend Lady Chisholm on introducing it so lucidly and bringing to life the importance of its provisions.

I also join other noble Lords in recognising the enormous contribution that Dame Fiona Caldicott has made to the area of data safety and security in the health and care service. As the noble Lord, Lord Patel, pointed out, over many years she has had a profoundly positive impact in this area. The Bill’s purpose, and in some ways its genesis, rests on her work and desire to put the issue even more front and centre than it is today. I thank her profoundly for that.

At the heart of our discussion today is maintaining and strengthening the public’s trust in the appropriate and effective use of health and social care data. The interests of patients and the public are at the heart of this Bill and the reason why it is such an important piece of legislation. As we reflect on it, I think it is important to bear in mind two truths. The first is that the NHS remains the most trusted institution in the country for holding and using data. That was confirmed by recent research by KPMG. The second is that in England, we have a world-class, comprehensive health system offering a unique opportunity to bring together an unrivalled, diverse, longitudinal dataset on the health and care of more than 55 million people. Let me be clear: we need to protect the first truth, otherwise we will not realise the extraordinary benefits provided by the latter. Giving the NDG a statutory footing is an important part of realising the same, because we will underpin the trust we need to deliver the healthcare transformation that we all want to achieve.

As the noble Baroness, Lady Kidron, and the noble Lord, Lord Knight, pointed out, the potential gains in front of us from the digital revolution are enormous: improving outcomes for patients, making the health system safer and more efficient, and improving research so that patients benefit more quickly from medical breakthroughs. To secure these benefits, we need to appreciate and act on people’s concerns about how their data is used, who it is shared with and whether that is lawful. People want to understand, and have more control over, how their data is collected and used, and to see the benefits being realised for themselves, other patients and the health system more widely.

The noble Baroness, Lady Kidron, makes an excellent point about the value of data and points out some of the concerning behaviour that we have seen in recent history. I agree with the noble Baroness, Lady Thornton, that the Bill is not the right place to deal with those issues, but there is a concerted effort—heavily influenced by the NDG—going into what is the proper way to value the NHS data asset and then realise that value in a fair way that maintains the public’s confidence. We had a fantastic debate instigated by the noble Lord, Lord Freyberg, about six weeks ago on that topic. In that time, we have published a new code of conduct on data driven technologies, and there will be much more to come. I look forward to working with the noble Baroness on developing that.

As the noble Baroness, Lady Walmsley, reminded us, the ghost of care.data is always present at this feast. Experience tells us that public confidence in the Government’s ability to hold, share and use data cannot be taken for granted. If data and information are to be used effectively and their great potential unlocked, we need to strengthen the public’s confidence in the safeguards in place to protect it from inappropriate use. Of course, this is a time of great technological change, and new uses of data are transforming the type of care that is possible to deliver. There are exciting government initiatives to make the best of this opportunity: local health and care records, global digital exemplars and digital innovation hubs. Meanwhile, academics, clinicians and life sciences companies of the kind mentioned by the noble Lord, Lord Knight, are developing pioneering digital therapies and algorithms that will utterly transform healthcare in the years ahead.

Last week, the Government published the Secretary of State’s new vision and a standards document on the future of healthcare, describing a more tech-driven NHS so that the health and care system can make the best use of technology to support preventive, predictive and personalised care.

The potential is here today, but to fully enjoy its fruits, we need to put in place a bedrock of reassurance. That means improving cybersecurity, as well as clear rules around privacy and data sharing. The National Data Guardian is an essential stratum in this bedrock. It is one safeguard that we already have in place to ensure that the interests of the patient are front and centre of all our deliberations about the best way for the NHS and the UK economy to make the most of those innovations.

Let me be clear, if I have not been already, that the Government strongly support the Bill. As my noble friend Lady Chisholm pointed out, it was a manifesto commitment of my party at the election. By supporting the Bill and putting the NDG on a statutory footing, we are playing our role in ensuring that it has the powers needed to make an even more positive contribution in future, allowing the office to effectively advise and challenge the healthcare system. As such, it represents a significant moment in our efforts to maintain and strengthen the public’s trust in the proper use of health and care data.

The Government want the Bill to succeed. I am confident that it will achieve the aims that my noble friend Lady Chisholm set out. The NDG will, as it has to date, work in concert with the Information Commissioner. There has consistently been cross-party support for the Bill, which I welcome in our debate today, as well as support from professional organisations within the health and care sector, as the noble Lord, Lord Patel, reminded us. I hope that it will make swift progress through its remaining stages.

Let me just deal with some of the questions raised today and, I hope, provide the reassurance that noble Lords are looking for. The noble Baroness, Lady Thornton, asked about demographic data. I can confirm to her that where issues surrounding demographic data have the potential to impact on or form part of the processing of health and adult social care data, this would fall within the NDG’s statutory remit and it would be able to publish formal statutory guidance on the topic, with organisations having a corresponding legal duty to have regard to that guidance. I hope that that provides the reassurance that she was looking for.

The noble Lord, Lord Knight, and the noble Baroness, Lady Kidron, asked about children’s social care data. Children’s health data is of course covered in the remit. The reason that their social care data is not is that it has its own safeguards and protections which operate within a different legal framework and is governed by its own statutory guidance. However, I can tell noble Lords that my department and the Department for Education have reached a sensible interpretation of the Bill which would not preclude the National Data Guardian engaging constructively with the DfE on adult social care data and its interaction with or effect on children’s social care data. There has been an exchange of letters between the departments to formalise this agreement. I am happy to provide more reassurance on that front, but what I can say now is that this relationship is already being developed and we are finding a sensible way to interpret the powers within existing regulatory frameworks to make sure that there is a much more joined-up system. I should also mention that the Department of Health and Social Care is working closely with the Home Office on its online harms White Paper so, again, we are making sure that there is a cross-government approach to dealing with this issue.

I will just quickly deal with some of the other issues that have been raised. The noble Baroness, Lady Kidron, asked about the duty of health providers. They have a duty to have regard to this statutory guidance, but this is of course the sort of thing that is inspected by the CQC and NHSI. It is worth pointing out that when the National Data Guardian provided her feedback on the WannaCry attack, it directly led to 10 data standards that are now embedded in the NHS contracts, so that gives you a sense of the kind of response that the system has to the high-quality advice that comes from the National Data Guardian when there are problems. I confirm to the noble Baroness that it will be up to the National Data Guardian to decide on her priorities.

The noble Baroness, Lady Walmsley, asked about the national data opt-out. I tell her that we ran an extensive public campaign in May, which has continued from then. It is now much easier to opt out oneself rather than, as she pointed out, having to go through GPs as in the past, which not all GPs were wild about, it has to be said. Nevertheless, the service is in a public beta at the moment, so we are honing and improving it and are always keen to have feedback. One thing that I found reassuring about the introduction of the new single data opt-out is that we have seen people who have previously opted out who are now opting back in. I find that rather encouraging; it is quite a good metric of whether we are doing the right thing. I therefore think that there is some cause for encouragement but I of course take the noble Baroness’s advice seriously.

In terms of how this relates to Wales, it will be up to the Welsh Government to implement with the same statutory force that the NDG will have in England, because health and care are devolved issues. That is something that the noble Baroness may be keen to impress upon the Welsh Government.

On the costs of implementation, all authorities have a responsibility to take standards into account—that is part of their normal, everyday life—but I should point out that there are major investments going into the IT space in health and care. For example, a big investment, which was centrally funded, has gone into replacing unsupported IT systems following the WannaCry attack. So there is central funding support for some of these changes.

Helpful advice and guidance is something that I would need to speak to Dame Fiona about personally. I am sure that she would be willing to provide it; it is certainly within her ability to do so and she is not precluded from that.

To conclude, I hope that I have been able to reassure all noble Lords that the Government take seriously and are dealing with the points that they have raised. This Bill is an essential building block in the foundation of trust that we need to have in this country in order to make sure that the public are with us on this extraordinary technological journey that we are on at the moment, which will transform the way that we deliver health and care and will deliver radically better health outcomes for patients. That is something that I am sure we all want to see. I close by once again thanking my noble friend Lady Chisholm for introducing this Bill. I look forward to its swift passage through this House.

Health and Social Care (National Data Guardian) Bill

Lord O'Shaughnessy Excerpts

3rd reading (Hansard): House of Lords
Wednesday 12th December 2018 Lords Chamber

[Baroness Chisholm of Owlpen (Con)]

My Lords, in moving that the Bill do now pass, I express my gratitude to all noble Lords for their interest in the Bill. I want particularly to thank the noble Baronesses, Lady Thornton, Lady Walmsley and Lady Kidron, and the noble Lords, Lord Patel and Lord Knight of Weymouth. Extended thanks must also go to my honourable friends in the other place, Jo Churchill, who introduced this Bill, and Peter Bone, its recent sponsor. My life was made a great deal easier during the passage of the Bill by the excellent work of the Bill team, and the continual assistance of the Minister, my noble friend Lord O’Shaughnessy, along with that of the Department of Health and Social Care. Before I sit down, I must also mention and thank the current National Data Guardian, Dame Fiona Caldicott, who has contributed so much to work in this area. I beg to move.

[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord O’Shaughnessy) (Con)]

My Lords, I join my noble friend briefly in congratulating all those involved in the passage of the Bill. I also extend my thanks to her for her sterling work in raising this issue. The Government strongly support the passage of this Bill and we hope it will achieve Royal Assent swiftly. With the permission of the House, I need to clarify an important point raised at Second Reading on demographic data. I have laid a letter on this subject before the House as a more extended account.

The role of the National Data Guardian is, first and foremost, about good practice in supporting organisations and individuals who process health and adult social care data. The Bill is drafted widely to allow the NDG to issue guidance about the processing of health and adult social care data. This should be interpreted broadly and would allow for the NDG to produce guidance on issues that impact on the processing of health and adult social care data. This would include, for example, good practice in security standards for storing health and adult social care data. This is an example of where guidance is not strictly focussed on health and social data itself, but about the processes and issues that could impact it. Almost anything that should be taken into account when processing health and adult social care data—or which broadly has the potential to impact, affect or influence that processing—would fall within the scope of that definition. With that clarification, I hope we will be able to move forward and that noble Lords will support this Bill. I once again thank my noble friend and congratulate her on her sterling effort.