Health and Social Care (National Data Guardian) Bill

Jackie Doyle-Price Excerpts

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

[The Parliamentary Under-Secretary of State for Health and Social Care (Jackie Doyle-Price)]

I thank all hon. Members who have contributed to the debate today. I particularly want to thank my hon. Friend the Member for Wellingborough (Mr Bone). I cannot believe that this is the first private Member’s Bill that he has taken through to Third Reading, as he has had so many. I am delighted to have collaborated with him on achieving this. It is quite an achievement. He was typically generous about me in his comments, which was completely undeserved. He was quite right when he said that thanks need to go to my hon. Friend the Member for Bury St Edmunds (Jo Churchill), who was the inspiration behind the Bill.

I want briefly to set out why the Government view the Bill as an important measure and why we are keen to see it progress and to put the National Data Guardian on to a statutory footing. The Government are committed to ensuring that the health and adult social care system in England realises the full benefits of sharing health and care data in a safe, secure and legal way. We have talked a lot today about the benefits of such data sharing. However, if data and information are to be used effectively to support better health and care outcomes, it is essential that the public have trust and confidence that safeguards are in place to protect the data from inappropriate use. That is the ethos behind the establishment of the National Data Guardian. The guardian will be an independent, authoritative voice for individuals on how their data should be used. At the heart of this is the relationship between health providers and individuals, and we need to maintain an appropriate balance between safeguarding and privacy as well as underlining the serious principle of informed consent by patients.

I should like to clarify the scope of the legislation. The National Data Guardian’s remit covers all health and adult social care data, which is defined in the Bill as essentially the same as “patient information” under section 251 of the National Health Service Act 2006. That basically enables the National Data Guardian to influence anything that impacts on the processing of health and adult social care data held by all the organisations listed in the Bill. This will enable the promotion of good challenge and the building of assurance across the health care system, as well as enabling the system to access the data it needs in order to run safely, effectively and efficiently.

I cannot emphasise enough the fact that the voice of the patient and the service user is really the paramount principle under which the National Data Guardian will operate, notwithstanding the fact that she will be working through the use of guidance to providers. It is basically taking the position of what is in the best interests of the patient. In so doing, we hope that the guidance she issues will establish confidence on the part of the public that their data is being used effectively.

Much has already been said today about the role of Dame Fiona Caldicott, who is the first National Data Guardian. She has been described as phenomenal, energetic and influential, but I wish to take this opportunity to recognise the enormous contribution she has made. I am sure she will take full advantage of the statutory powers that will follow once the Bill reaches the statute book.

I am delighted to have the support of the Opposition on the Bill, because the use of data sharing is essential to secure the best possible health treatment for all patients. The hon. Member for Ellesmere Port and Neston (Justin Madders) expressed the desire that the National Data Guardian should have real teeth. I emphasise again that she will act in the interests of patients, and that will mean challenging providers. As we all know, some providers are instinctively cautious and defensive about data sharing, and the real challenge is that patients are sure, thanks to the National Data Guardian’s advocacy, that it is the right thing to do. Nor should there be any escape for health professionals and providers.

The National Data Guardian will, as the hon. Gentleman said, use her powers by issuing guidance, and the clear expectation is that everyone will abide by that guidance. We see the aim as one of changing organisational behaviour rather than having rules. The fact that the National Data Guardian will produce an annual report on how she is discharging her obligations, and how the health sector is reacting, will be a powerful tool. We often find that transparency can be much more effective than rules, regulations and laws. Once behaviour that is not delivering the outcomes that we intend through legislation is highlighted, the public embarrassment will be more effective than many of the tools that we have at our disposal. It is heartening to see the interest in the Bill in the Chamber, and we have heard some individual examples of poor practice. I am sure we will have plenty if anyone does not abide by Dame Fiona’s advice.

We expect the National Data Guardian to use her annual report to implement further guidance. We fully expect that the duty for adult health and social care organisations and providers to have regard to that guidance will also be taken into account by the Care Quality Commission and the Information Commissioner’s Office, so it is not just the Government and the National Data Guardian that can hold them to account. We expect a serious change in behaviour in the future.

The National Data Guardian will look at her own operating approaches to see what more can be done to ensure that the role has teeth. That is also part of the reason for putting the role on a statutory footing. The fact that her advice will have legal clout will give it more teeth. She will have day-to-day communication mechanisms at her disposal to highlight areas of good and poor practice, and the statutory duty to consult people she considers appropriate before publishing guidance. That will fuel an important debate about behaviour in this area.

Other issues that have arisen in the debate today and in Committee include concerns as to why children’s social care data is not covered by the Bill. I would like to explain the reasoning behind that and why it is not a weakness in the Bill. Data relating to children’s social care has its own safeguards and protections, which operate under a different legal framework from adult health and social care. Those safeguards and protections are governed by their own statutory guidance, and we would not want to include anything that conflicts with established guidelines.

The context and imperative for using and sharing data to safeguard children is also different, and the most important consideration is whether sharing information is likely to safeguard and protect a child. That is an important point, because with children safeguarding trumps privacy and personal ownership.

Rather than extending the National Data Guardian’s role to cover children’s social care data, action should remain targeted elsewhere on improving timely and proportionate information sharing to keep children safe. Officials in the Department for Education and the Department of Health and Social Care have reached a sensible interpretation of the Bill, which would not preclude the National Data Guardian from engaging constructively with the Department for Education on adult social care data and its interaction with children’s social care data. There has been an exchange of letters between the Departments to formalise that agreement. On safeguarding children, the powers in the Children and Social Work Act 2017 are the mechanism for the Departments to act and to share information.

We worked across Government to amend the Data Protection Act 2018 to introduce safeguarding as a condition by which information can be shared without consent to keep children safe. We will continue to work with local authorities to consider and monitor the impact of the National Data Guardian in this space, where it is appropriate to work outside the remit of the statutory powers set out in the Act in a way that is consistent with the law and regulations as they currently apply to sharing data on children. We will keep a watching brief on that but, at this stage, we should not do anything to disrupt established obligations. We can establish good practice in this area through sensible discussion between the National Data Guardian, the DFE and the Department of Health and Social Care, which is entirely consistent with how we co-ordinate the respective obligations of children’s social care and adult social care services.

I have very little time, but I will touch on one or two other issues before concluding. There was a brief discussion earlier on the territorial extent of the Bill, and I can confirm that the Bill applies only to England. The Bill technically applies to England and Wales because of how we approach legislation in this place, but it extends only to England.

I can also confirm that public health data is included in the remit of the Bill, so that data will also be shared. I also confirm that the Bill covers local authorities where they are actioning services with regard to adult social care and, of course, public health.

I conclude by confirming again the Government’s commitment to this Bill and our desire to see it succeed. I am confident that the Bill will achieve the aims my hon. Friend the Member for Wellingborough and all hon. Members have set out. After today’s important stage, I hope the Bill will make swift progress and will receive Royal Assent as soon as possible.