New Clause 1 — Oversight role of the National Data Guardian

Prayers – in the House of Commons at 9:30 am on 9 January 2015.

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‘(1) The Secretary of State shall within 30 days of this Act coming into force commence a consultation process on making the role of the National Data Guardian statutory. The consultation process must—

(a) include reference to the overarching aims, objectives and role of the National Data Guardian, including oversight of data sharing as set out in this Act; and

(b) last a minimum of 61 days.

(2) The Secretary of State shall publish a report following the consultation process and shall lay the Report before each House of Parliament.”—(Mr Jamie Reed.)

Brought up, and read the First time.

Photo of Jamie Reed Jamie Reed Shadow Minister (Health) 9:48, 9 January 2015

I beg to move, That the clause be read a Second time.

Before I begin, I am sure that the eyes of every Member are on events in France and we wish the French authorities the very best of luck in their endeavours in the aftermath of Wednesday’s events.

I congratulate Jeremy Lefroy on navigating his Bill to this stage. Not many private Members’ Bills make it to this point. This is a good Bill and I am sure we would all like to see it on the statute book. I hope that it can complete its final Commons stages today.

On 13 November 2014, the Secretary of State for Health announced that Dame Fiona Caldicott would be the new national data guardian for health and care, and that her role would become

“the patients’ champion on security of personal medical information.”

She will

“be able to intervene if she is concerned by how an organisation is sharing data. She can refer concerns directly to the Information Commissioner’s Office (ICO) and the Care Quality Commission (CQC)”.

Those principles are supported by all Opposition Members. Sharing data and information can and, indeed, should improve health care, but we must ensure that patient privacy is protected at all times.

If Dame Fiona’s role is to look at how organisations share data, that role will become directly relevant to the provisions in clause 3. In his announcement, the Secretary of State for Health said:

“I intend to put the National Data Guardian on a legal footing at the earliest opportunity”.

The business of the House is not so demanding that he can blame a lack of parliamentary time for not introducing such plans, especially as there have been concerns about data for a very long time. Those concerns have become even more acute since the bungled implementation of the care.data scheme, which is so important to our research base.

In Committee, I told the Minister that if the Government did not make progress on their announcement, the Opposition would help them out. That help has arrived today. The Government have done nothing, so I have tabled new clause 1 to place a duty on the Secretary of State to hold a consultation process on the role of a statutory national data guardian. We do not wish to prejudice the role by prescribing its functions. It is right that the role should be determined by consulting those on whom it will have an impact, not least Dame Fiona herself. Many stakeholders will be keen to contribute to a consultation process; they are crying out for progress.

The Bill places a duty on health care providers to share information wherever relevant. As new systems are put to the test, there will inevitably be more pressure on the national data guardian. The new clause would place a duty on the Secretary of State to start a consultation within 30 days of the passage of the Bill. We are all keen to see progress, and the new clause would ensure that the process got under way almost immediately.

We want the consultation to be meaningful and thorough to ensure that the new role is as effective as possible in maintaining standards by highlighting and, more importantly, fixing poor practice as and when it occurs. The Minister said in Committee that the delay to date was because the Government wanted to consult widely with stakeholders. That is the precisely the purpose of new clause 1, so I can only imagine that the Government will support it. If they oppose it, will he explain why? Will he commit himself to writing to me about the proposed timeline for the consultation and the planned legislative timetable for putting the role on a statutory footing, as we discussed in Committee?

Sharing data can lead to much better outcomes for patients throughout the health and social care sector, but we must ensure that personal data are used safely, and that any promotion of data sharing is done responsibly to improve health outcomes. That principle has already been explored in depth, and the Labour party is clear that it supports that principle, as I am sure do all Members. There is wide support for the role of the national data guardian. Putting it on a statutory footing has cross-party support. I hope that the Government will get on with it today.

Photo of Jeremy Lefroy Jeremy Lefroy Conservative, Stafford

I thank Mr Reed for tabling new clause 1, which allows us to debate the issue. I am most grateful to him for his full and constructive engagement with the Bill. A consultation on making the role of the national data guardian statutory is extremely important, and I fully appreciate the reasons why he has tabled the new clause.

I welcome the appointment last November of Dame Fiona Caldicott as the first national data guardian. Her extensive knowledge and experience in this area will ensure strong and visible leadership. She, together with her panel, will act as a source of clear authoritative advice and guidance across the health and care system. The Secretary of State said at the time of her appointment:

“We need to be as determined to guarantee personal data is protected as we are enthusiastic to reap the benefits of sharing it. Dame Fiona will oversee the safe use of people’s personal health and care information and hold organisations to account if there is any cause for concern, ensuring public confidence.”

Let me make it quite clear that the clauses on the duty to share information are not about care.data, which is another issue for another time. My Bill is about data being shared only with those who are directly responsible for an individual’s care for the purposes of that care. Its remit is very restrictive.

A consultation should, as the new clause provides, include reference to

“oversight of data sharing as set out in” the Bill. Understandably, concerns have been raised that a duty to share information might somehow dilute the vital principle of patient confidentiality, which is protected by statute and common law. As I have explained before, I do not believe it will do so.

The seventh of the revised Caldicott principles, as set out in “The Information Governance Review”, is that

“The duty to share information can be as important as the duty to protect patient confidentiality. Health and social care professionals should have the confidence to share information in the best interests of their patients within the framework set out by these principles.”

As was set out on Second Reading and in Committee, clause 3 introduces a duty to share information. That must be done when it is in the person’s best interests and it is

“likely to facilitate the provision to the individual of health services or adult social care”.

Having a statutory duty to share information for the benefit of a person’s care, within the clear limits set out in the Bill, would, alongside the existing strong statutory protection for confidentiality, provide health and social care professionals with the confidence to which Dame Fiona’s report refers.

The consultation on the national data guardian will provide the opportunity to set out how oversight would work for the duty introduced by the Bill, should it become law, under the legislation that will make the role of the NDG statutory. If the consultation cannot be established through a clause in the Bill, which I understand may be the case due to the timing of the general election—the Minister will go into that, I believe—it needs to happen at the earliest possible opportunity.

Photo of Daniel Poulter Daniel Poulter The Parliamentary Under-Secretary of State for Health

The new clause relates to clauses 2, 3 and 4. Clause 2 will place a duty on providers and commissioners of publicly funded health and adult social care to use a consistent identifier in a person’s health and care records and correspondence. The consistent identifier must be specified in regulations, and the Government’s intention is that the NHS number will be specified. It is important to note, as my hon. Friend Jeremy Lefroy outlined, that the duty to use the NHS number would apply only in the direct provision of care and when it was in the individual’s best interests. As he articulately said, this matter is very different from the issues with care.data that we have discussed. There is a duty on professionals to share information in the best interests of patients in respect of the provision of direct care.

Clause 3 will introduce a duty to share information that is held by providers and commissioners when it is in an individual’s best interests and will support their direct care and treatment. As we discussed in Committee, that is an essential part of the delivery of safe, effective and high-quality care.

Clause 4 defines health or adult social care commissioners or providers. Its effect will be that the duties imposed by clauses 2 and 3 will apply only to relevant health or adult social care commissioners or providers. They are defined as public bodies exercising health or adult social care in England and any person, other than an employee, who provides such services or care under arrangements within a public body.

I welcome the constructive support of the shadow Minister, Mr Reed, throughout the passage of the Bill. There has been a great deal of consensus, and rightly so. I am grateful for his support for the role of the national data guardian. As was discussed in Committee, the Government are committed to consulting on the role of the national data guardian and the Secretary of State has given his unequivocal support to the consultation. We believe that having a data guardian is an important additional safeguard in the system.

As the House will be aware, Dame Fiona Caldicott has been appointed as the first national data guardian and has already built up significant credibility in her role of challenging and scrutinising the way in which information is shared across the health and social care system. Strengthening and broadening the role of the national data guardian will further enhance the confidence of patients and the public that there is a strong voice for their rights and protections in this area.

Even without a legislative basis, Dame Fiona’s panel, which was previously known as the independent information governance oversight panel, has built its reputation as an effective and authoritative voice. It has helped to ensure that data and information are shared in a way that allows the health and care system to access what it needs to improve outcomes for patients, while protecting against their inappropriate use. Having made significant progress, there is now clear agreement across the House that it is important to embed the national data guardian in the health and care system as a powerful independent voice, and to put that role on a statutory footing.

I understand that the new clause is motivated by a desire to support the further development of the national data guardian, but I hope that the hon. Gentleman will agree on reflection that primary legislation is not appropriate or necessary to ensure a consultation. I am pleased to see the desire across the House to consult, and there is a clear commitment from both main political parties to consult on the role of the guardian. Given that Government commitment, I hope the House will be reassured, particularly with the clear cross-party support, that the new clause is not necessary.

A public consultation is something to which the whole House is committed. The Government believe that the role of the national data guardian is crucial for protecting the interests of patients and service users, and rebuilding public confidence in how personal information is used. We must get the role of the data guardian right and consult properly. I do not believe that taking the unprecedented step of setting short and arbitrary deadlines to consult on legislation will in any way assist in getting the consultation right. Establishing the role of the data guardian is a complex process, and as the House will agree, it is critical that the role and powers of the data guardian are properly consulted on. I am therefore pleased to inform the House that we are already consulting informally with key stakeholders, and the outcome of those informal conversations will be used to inform the full public consultation that will follow. It is likely that the deadline for any consultation as required in the new clause would fall within the period of purdah, and it is a long-standing convention, followed by successive Governments, that consultations may not take place within that period.

I reaffirm the commitment to put the national data guardian on a statutory footing at the first suitable legislative opportunity, with legal duties requiring organisations to abide by the advice, and legal powers and sanctions, including the ability to withdraw inappropriate access to data. We must protect against the misuse of personal data. We are committed to consulting a wide range of stakeholders on what functions and powers the national data guardian should have, and as I have outlined, that informal consultation has already begun. In future, the public consultation will include consideration of any sanctions that the national data guardian may place on those who misuse personal health and care information.

We are determined that the public consultation will ensure that the functions and powers associated with the national data guardian play an important part in increasing public confidence that information is being appropriately used and shared. The House will be pleased to note that we have established interim arrangements under which the national data guardian already has a strengthened role. Those interim measures include the Information Commissioner’s Office and the Care Quality Commission agreeing to pay regard to any concerns raised.

As there is so much common ground on the role of the national data guardian, and a clear commitment to consult fully, I hope the hon. Gentleman will agree with the approach I have outlined and be satisfied with my reassurances, and that he will withdraw the new clause.

Photo of Jamie Reed Jamie Reed Shadow Minister (Health) 10:00, 9 January 2015

I am grateful to the Minister for his response and for the constructive way that we have dealt with the Bill, which in many ways demonstrates some of the best traditions of the House. I am a little disappointed, given the fallow—dare I say useless—fifth year of this five-year Parliament, that time has not been found to address these issues. The protection and use of individual data, not just in health services but across the public sector, is one of the biggest and most important emerging issues facing our politics and society, and the Minister is right to say that such matters need to be treated carefully, judiciously, and with diligence and attention to detail.

Given the cross-party support and the Minister’s assurances, I beg to ask leave to withdraw the clause.

Clause, by leave, withdrawn.