Health and Social Care Bill

Baroness Wheeler Excerpts

Wednesday 21st December 2011 Lords Chamber

I notice that the Minister has called a debate during dinner on 10 January on this very issue. Of course, it would be helpful to the House if that document could be published before the debate takes place. I hope that the Minister will look at this again and reconsider this question and will try to ensure that the department, when there is a matter under consideration and discussion on a Bill, does not close the door without his being able to be consulted. I am quite sure that he has not been consulted because his courtesy is well known to us all. A fresh look must be given to this subject and the document published in early January.

[Baroness Wheeler]

My Lords, in responding to this group I should like first to raise on behalf of my noble friend Lady Thornton the issue of the register of risks on the Health and Social Care Bill. I also apologise on her behalf for not raising the matter at the appropriate time.

In the debate on the Motion of Regret on 7 December several noble Lords referred to the starting point of Report being timed so that the appeal on the Information Commissioner’s report will have been completed and the House will know the result. The Minister himself said:

“I am as keen as anyone to see the matter speedily resolved”.—[Official Report, 7/12/11; col. 736.]

The usual channels are, of course, discussing the next stage of the Bill. We agree with the noble Baroness, Lady Williams, about the risk of this issue not being resolved in time for the next stage. On 7 December, she said:

“I fear that it may hang like a dark shadow over the whole of the Report stage”.—[Official Report, 7/12/11; col. 726.]

In the same debate the noble and learned Lord, Lord Mackay of Clashfern, said:

“I believe the solution proposed by my noble friend”—

the noble Baroness, Lady Williams—

“is the best one … that an expedited decision should be sought from the tribunal”.—[Official Report, 7/11/12; col. 731.]

I have asked my noble friend the opposition Chief Whip, and appeal to the usual channels, not to finalise the arrangements for Report and the timetable until the House has an answer to the question. Our understanding is that a normal timescale, if we are lucky, might mean that we will have a tribunal decision in late February. The Government will then have the option of appealing to the Upper Tribunal. Does the Secretary of State intend to seek expedition of this process? What steps have Ministers taken to ensure that the appeal is heard as early as possible? The Minister can, if he wishes, respond in writing to my noble friend, though obviously he will need to do it as soon as possible.

I shall also speak briefly to this group of amendments generally. I support the amendments tabled by my noble friend Lord Warner and the noble Lord, Lord Patel, all of which seek to strengthen the Secretary of State’s duty to prepare and publish information standards governing the collection, processing and dissemination of information on the provision of NHS health and adult social care. I know that the Minister is in favour of having light-touch definitions in the Bill, but we strongly support being more specific about what the information standard is to be, what it is for and what it should include.

The definition proposed in Amendment 347A underlines that it must include,

“the efficient and effective collection … of information that”—

most importantly—

“benefits the commissioning and provision of health and adult social care services”.

It is equally important to specify that the standard includes the provision of information that will help improve public health and well-being and assist the public’s ability to make informed choices about care and treatment. We also support Amendment 347B, from the noble Lord, Lord Low, which seeks to ensure that the,

“information standard must include a requirement to record patients’ preferred reading format: standard print, large print, audio or Braille”.

We support the general aim of this part of the Bill: to place the current health and social care information centre on a firmer statutory footing, replacing the current special health authority. We have a number of issues to raise, and will do so in the next group.

[Baroness Williams of Crosby]

In view of the reference to me by the noble Baroness, Lady Wheeler, perhaps I may say a few words before the debate proceeds and the Minister replies. The Committee showed good sense—and the noble Baroness, Lady Thornton, was good enough not to press the matter to a vote—over the information tribunal’s decision on the risk register. At the time, it was sensible to undertake to withhold our judgment until there had been an opportunity for the tribunal to consider the Department of Health’s appeal. However, the intervention by the noble and learned Lord, Lord Mackay—as the noble Baroness, Lady Wheeler, indicated—clearly suggests that it would be possible, by a mutual approach from the Government and the Opposition, to speed up the processes under which the appeal was held.

Given that the government Chief Whip agreed that the matter should not come before the House on Report before the end of January, that provided an additional three weeks—a reasonable period of time—to try to persuade the tribunal to act reasonably rapidly. The noble and learned Lord, Lord Mackay of Clashfern, was good enough to say that in some cases which he knew of, the tribunal had been able to deal with an issue in as little as three or four days. That seems very apposite, since it is hard to think of anything much more constitutionally important than the Report stage of a Bill of this kind, and there should be no question of the debate on Report taking place before there is an outcome to the tribunal appeal.

This House recognised that it was proper that the law should take its normal course. We therefore withheld any attempt to try to press it by, for example, insisting on a vote. I think that that was to the credit of the Official Opposition. However, it is quite clear that the decision is very germane to the Report stage. It is highly relevant. All of us accept that if the appeal is upheld then we will be bound by it in a proper course of law, appropriate to all people who come before the tribunal. However, we also all recognise that it lies upon the Government to endeavour to reach a decision as quickly as possible. I am sure that the Opposition, and certainly we on these Benches, would strongly support an approach of that kind.

I would simply plead with the Minister, who has been so reasonable to the House on so many matters, to recognise that there is a real difficulty if the appeal, not having been heard, hangs over Report, and as a result leaves people able to say, “But if the appeal had gone the other way, X and Y would follow”. If the Department of Health—whose record is patchy, to say the least, as the noble Lord, Lord Owen, has rather sharply pointed out—really cares about information being made available, or at the least upholding the law that makes the tribunal make a final decision, it really is crucial that, at the end of this Committee stage, we hear from the Minister whether steps are being taken to accelerate the process as much as possible to enable Report to start properly at the end of January. I would simply urge that attention might also be paid to the further evidence provided by the noble Lord, Lord Owen, which, to say the least, is somewhat disturbing.

--- Later in debate ---

The new committee could find a natural home in the Information Commissioner’s office and could co-ordinate clearly with the National Research Ethics Service. I ask the Government to consider whether the Bill and the current plans are correct or whether there are better ways both to safeguard patient confidentiality and to encourage and foster the very important research agenda that the Government have given an enormous commitment to and that has been universally welcomed.

[Baroness Wheeler]

My Lords, I broadly welcome these provisions, which deal with the new Health and Social Care Information Centre and put the existing special health authority on a statutory footing. The centre was established in 2005 by the Labour Government to improve information quality, data standards and access to information, to deliver the information required by front-line services and to support commissioning and clinical audit. The centre has had a large measure of success since its establishment, particularly in developing bedrock quality-improvement initiatives in the NHS—for example, indicators for quality improvement and patient-reported outcomes measures. NHS clinical teams have access to more than 200 indicators that are generally accepted as effective measures of high-quality care.

However, while welcoming the broad intent and purpose of this Section, I note that the provisions increase the directions given to the information centre about when it should and should not publish data and how data should be used. It is clear in this context that there are serious concerns that the Government needs to address among noble Lords, patients and doctors' organisations about patient confidentiality, and about whether the Government's proposals go far enough to protect patient data. These concerns were also voiced in response to the Government's statement on UK life sciences industries in the House on 6 December, in which they announced their intention to share much more patient information with the private and independent sectors in anonymised form to aid medical research and development. As we know, under that initiative from December onwards data regarding 250,000 patients will be released online.

I hope that the Minister will recognise these concerns and the need for what the chief executive of Cancer Research UK called,

“strict safeguards that instil public confidence”.

Clause 256 details when information should and should not be published by the information centre, and in particular that it should not publish data that could reveal a person's identity. Amendment 348B, tabled by the noble Lord, Lord Walton, would be the ultimate safeguard, but we recognise the need to find a way through that addresses concerns that doctor and GP-patient confidentiality could be harmed and provides safeguards that are strong enough to protect patients. It is certainly worth acknowledging that, if we are able to get the confidentiality issues right, the UK has a huge opportunity to lead the world in health research.

We support Amendment 348A, tabled by my noble friend Lord Kennedy and other noble Lords. It would create an additional duty that would allow the information centre to request the information required to conduct clinical audits. This requirement would make it explicit that the centre can collect information from organisations identified in the Bill as required to undertake national clinical audits, thereby strengthening its current role of collating such information into a duty to collect clinical audit data from a variety of providers. We welcome this.

Finally, in the debate on the UK life sciences industry Statement, my noble friend Lady Thornton underlined the difficulties with using anonymised data and sought reassurances from the Minister on how confidential patient data will be handled, stored and processed. I think it is right that the Minister repeats those assurances in the context of the provisions in the Bill for the information standards and the centre, and I will be grateful if he will do so.

[Earl Howe]

My Lords, the provisions in Chapter 2 of Part 9 will enable the information centre to become a focal point for health and social care information, linking data together, publishing them anonymously and helping to make information more accessible. I note what the noble Baroness, Lady Wheeler, had to say on Amendment 348, which we dealt with in the previous group of amendments, but I am grateful to her for her comments.

Amendment 348A seeks to provide a specific power in the Bill for the information centre to be able to require information needed for national clinical audits. Clinical audit is an essential mechanism for improving the quality of care patients receive. However, we do not believe that the amendment is necessary. We have mandated participation in national clinical audits within the National Clinical Audit and Patient Outcomes Programme through the NHS standard contract for acute services. This is reinforced in the operating framework for the NHS in England for 2012-13. In addition, there are already sufficient powers in the Bill for the information centre to be able to require information, where appropriate.

Amendment 348B seeks to prevent the information centre being able to collect information that identifies an individual. I am the first to recognise what a sensitive topic this is. Although my noble friend Lady Williams is not in her place, I hope she will allow me to address the question that she put to me earlier on in this connection.

Patients as a whole expect information about their care to flow between the professionals providing their health and social care to ensure that care is safe and effective as well as for other purposes, such as protecting the health of the general public. For example, PCTs currently use information, including patient-identifiable information, for commissioning. Some national clinical audits, such as the National Joint Registry, use patient-identifiable information to improve the quality and safety of patient care.

The noble Baroness, Lady Finlay, asked some extremely important questions about the functions of the information centre. The Bill sets out clear provisions controlling how the information centre can publish information. It would publish aggregated information, which is anonymised, and no information that identifies or could identify individual patients would be disclosed by the information centre, other than by dissemination or pursuant to further legal authority. Since its inception, the information centre has introduced strong security controls, published and implemented security policies and published information about its processing as required for compliance with the Department of Health’s information governance framework. It must at all times comply with the Human Rights Act, the Data Protection Act and any other applicable law. The centre would collect identifiable information within a secure environment but, as I have stressed, it would publish it only in anonymised form. This approach has been strongly recommended by several recent reviews, including the 2008 data-sharing review authored by the then Information Commissioner Richard Thomas and Mark Walport from the Wellcome Trust. That recommendation was reiterated in the Academy of Medical Sciences’ review published in January this year.

I agree with the noble Baroness that it is very important to protect identifiable information appropriately. However, as I hope she will accept, it is also critical that we are able to realise the enormous benefits of securely collecting and linking such information and publishing it in a de-identified form, as we intend the information centre should do. This will help professionals and the public better understand the quality and efficiency of services, enhance accountability, help enable people to exercise choice about the services they use and improve those services. In addition, I would like to highlight the safeguard in Clause 256(2)(b), which prohibits the centre from publishing any information it has collected which identifies or could identify an individual.

As I have said, while we do not believe that this amendment is appropriate, we recognise that there have been some concerns around ensuring that confidential information is appropriately protected. We have had, and continue to have, productive discussions with the BMA on this issue and we plan to bring forward amendments on Report that deal with confidential information in a way that balances patient confidentiality with the need effectively to share information across the system. I hope that those assurances will satisfy the noble Baroness.

Amendment 348C would require the appointment of a chair to the National Information Governance Committee, who would report to the Information Commissioner. The purpose of this committee would be to provide advice and assistance to the CQC in discharging its function to monitor information processing practice of health and social care bodies registered by the CQC from April 2013. The National Information Governance Committee is an advisory committee of the CQC, so it would not be appropriate for the chair of the committee to be accountable to an external body, such as the Information Commissioner. In addition, a reporting arrangement of that kind would be inconsistent with the Information Commissioner’s role as the independent and impartial authority responsible for promoting and enforcing the provisions of the Data Protection Act, the Freedom of Information Act and other legislation.

However, I would like to reassure the noble Baroness that the CQC can involve the Information Commissioner where appropriate and close collaboration between the Information Commissioner and the CQC will be important to support relevant organisations fully to comply with the requirements. I hope that those assurances will enable the noble Baroness to feel able comfortably not to press her amendment.

The noble Baroness asked about the Ethics and Confidentiality Committee of the NIGB, which provides essential support for research and other activities by advising the Secretary of State on whether to approve proposals to process confidential information without the need for patient consent, pursuant to the Health Service (Control of Patient Information) Regulations 2002 under Section 251 of the National Health Service Act 2006. We intend that the approval function will in future move to the following bodies: first, a new health research regulator, the HRA, for research approvals; secondly, the NHS Commissioning Board for service management approvals; and, thirdly, the Secretary of State for public health and social care approvals. Each of those bodies will need to put in place arrangements to secure the advice that they need to exercise their approval functions effectively. These arrangements are still being discussed but it seems likely that a body like the Ethics and Confidentiality Committee will continue to be required and officials are discussing future options with the NIGB. I hope that those comments are informative to noble Lords and that they will not press their amendments.