‘(4A) An information standard under subsection (1) must state the need for explicit patient consent for the disclosure of patient information, in accordance with the common law duty of confidentiality, unless the information has been anonymised or pseudonymised.’.
‘(7) The powers under this section refer exclusively to data which has been anonymised or pseudonymised or for which explicit consent for its use for these specified purposes has been obtained in accordance with the common law duty of confidentiality.’.
Amendment 651, in clause 242, page 200, line 41, at end insert—
‘(2A) The powers under this section refer exclusively to data which has been anonymised or pseudonymised or for which explicit consent for its use for these specified purposes has been obtained in accordance with the common law duty of confidentiality.’.
The Opposition want to make a series of amendments to this part of the Bill. For those Members who do not have their copy of the Bill open yet, I should say that this part of the Bill is headed “Health and adult social care services: information” and that the first chapter is headed “Information standards—this is part of what the Government have called their “information revolution”.
We have had conversations with the British Medical Association, and there is considerable concern about the need to protect patient confidentiality. The three amendments amend three different clauses and would protect patient confidentiality. They would ensure that there is no change to the existing requirement that any—[Interruption.]
Order. Ministers, I really do want to hear what the hon. Lady is saying, so could you be just a little quieter.
The purpose of the amendments is to ensure that there is no change to the current requirement that any disclosure, exchange, processing or transmission of confidential information have the consent of the patient or lawful proxy, subject to existing exceptions.
The concerns are that there is a lack of protection for patients’ identifiable data, because no clause makes it explicit that existing standards of confidentiality will be maintained. The amendments would provide assurance to doctors and patients that any data collection will be subject to existing legal and ethical standards of confidentiality.
Obviously, confidentiality plays an essential role in the relationship between health professionals and their patients. We do not want significant damage to be caused to health care as a result of the trust between patients and doctors being eroded. Fears that their data may be shared with others, including central Government, may result in patients withholding important information. That may not only affect their health, but have implications for the wider health service.
Will the Minister clarify how the standards proposed in the clause relate to existing and well established documents that provide guidance and set standards in the NHS? Those documents include the NHS code of practice on confidentiality, the care record guarantee and guidance for health care professionals from their regulatory bodies.
Amendment 659 has the same effect as amendment 656, but refers to clause 238. The clause appears to enable the Secretary of State or the board to authorise the collection of data without reference to any information governance controls or explanation as to why new powers to collect data are necessary.
In addition, data can be collected for an extremely broad purpose—that is, in connection with the provision of health services. The clause appears to run contrary to a number of Data Protection Act 1998 requirements, including the requirements that data should be obtained for a specified purpose and that any disclosure must be lawful in a broader sense and respect other legal restrictions on disclosure—for example, the common duty of confidentiality.
Furthermore, once the data are collected, it is not clear how long they will be retained or whether they will be transferred to third parties. The BMA expressed the view that removing the rights of patients and health care professionals in relation to the control of sensitive information is likely to fall foul of article 8 of the European convention on human rights.
Amendment 651 has the same effect and refers to clause 242. That clause is extremely permissive, which is a worry. It enables the Information Centre to require a health or social care body to provide it with any information without reference to confidentiality.
I take this opportunity to address concerns that come through in a series of amendments that the hon. Lady and other Opposition Members have tabled to this part of the Bill. In a way, the points she has raised touch on the thread of that concern, which the BMA has been aired with the Government and, I suspect, the Opposition. We are certainly listening to these points and we are sensitive to them.
The intention behind the amendments is right. This is about preserving patient and service user confidentiality, which I am sure Members on both sides of the Committee want to continue. We would certainly not want to see the Information Centre breaching confidentiality by publishing information about individual patients or service users. Subsection 243(1), which will be amended later, makes it clear that that is prohibited. Re-establishing the Information Centre in primary legislation presents an opportunity to ensure that the provisions are as strong as they need to be, and that was the basis on which we drafted the clauses.
Benefits can be gained from bringing information together for analysis, and in determining the role of the Information Centre we have carefully considered the safeguards that need to apply. It has for a long time been necessary to collect information that identifies individuals for a range of purposes, including tracking outcomes of care and treatment, medical research and public health analysis. Names and addresses are never needed, but other information such as a unique identifier, date of birth and postcode often are. Without those details, it is not possible to link information about the same individual obtained from different sources or at different times.
Many important purposes are already supported under regulations made under section 251 of the National Health Service Act 2006. They include purposes carried out by the existing Information Centre, and also by many other bodies. Without the powers in the Bill, the Information Centre would have to continue working under the arrangements in the 2006 Act to obtain the Secretary of State’s permission to do as the Secretary of State directed, which is nonsensical. The Government believe that bringing the collection and linking of information together in one place will enable strong controls to be put in place to safeguard information and reduce the number of flows of confidential information around the system, therefore strengthening confidentiality management overall.
In addition to the standards published by the board or the Secretary of State, and the guidance under clause 240 to which the Information Centre must have regard, the centre is required to publish its procedures for requests, and has powers and duties to give advice and guidance. However, given the importance that the Government attach to the issue, we will continue to consider whether the requirements are sufficient to provide the transparency that is needed.
My point is simply that the Government are and will continue to be responsive to, and listen to, the points that are made to us, and that is why in the correspondence and discussions in which we are engaged with the BMA, we will listen clearly and carefully to its concerns. I hope that today’s considerations will go a long way, if not all the way, to addressing the concerns that people following our proceedings might have. That is why I cannot give you a precise, hard end point at which we will stop listening. It is important that the Government continue to listen throughout the passage of the Bill.
No one is saying that the Minister should not continue to listen during the passage of the Bill. From what the Minister says, I understand that the Government have not come to any firm conclusions at this stage, and that they will listen carefully. What are they doing, however, about listening to what has been said today in Committee? The Minister has said that he has read in the papers today about the amendments that will come in the Lords, but what is he doing about listening today to what is being said today?
Later we will debate Government amendments to subsequent clauses in this part of the Bill, and those amendments address the sorts of concerns that have been expressed to the Government. They ensure that the intention of the clauses, which is that patient confidential information should not be released, is covered even more clearly. I want to deal with that important aspect in a moment.
Members will be aware of the report by the Academy of Medical Sciences published in January 2011: “A new pathway for the regulation and governance of health research.” It recommended the establishment of national safe havens or honest brokers be taken forward urgently. The report referred also to the 2008 data-sharing review published by the Information Commissioner and the director of the Wellcome Trust, which had made similar recommendations. The changes we propose for the Information Centre will create such an honest broker role in statute for the first time. The provisions would empower it to collect confidential and identifiable information, and to link information from different sources and over time, but the Information Centre will not be permitted to disclose information that might identify any individual patient or service user without further statutory permission.
Amendment 651 seeks to prevent the Information Centre from collecting anything other than de-identified information without the explicit consent of the individual concerned. Amendment 656 seeks to achieve the same goal by specifying an information standard that would impose the same requirements as the common law in respect of confidentiality. Amendment 659 again seeks to achieve the goal of constraining what the Information Centre collects by limiting what directions the Secretary of State and the NHS commissioning board may provide. As I have explained, the amendments would prevent the Information Centre from having the central role of honest broker in the data collection and linkage, and that strengthens the approach to confidentiality across the system. I stress that this is about strengthening confidentiality across the system. The Bill, as drafted, prohibits the Information Centre from publishing information that identifies individual service users. Indeed, in many cases that information will be confidential and publication would be unlawful.
We will shortly discuss Government amendments to clause 243, and ancillary amendments to clauses 238 and 239. They will further limit the circumstances in which the Information Centre can be directed, or choose to disseminate, any identifiable patient or service user information it collects, with confidentiality restrictions that are stronger and less flexible than those that are currently imposed by common law. Information, if used effectively, can provide enormous public benefits, and the Government are clear that it is essential that we free information from the organisational silos where it currently sits. We also believe, however, that that needs to be more tightly controlled than it has been in the past. For those reasons, and with that explanation and those reassurances, I hope that the hon. Lady will feel able to withdraw her amendments. If she does not, I will urge my colleagues to oppose them.
In summary, as I understand it, the Minister does not want to amend the Bill today, but he may want to amend the Bill later. He understands that there may be some difficulties, that the Committee is to be satisfied with the answer that we have heard today and that he is not prepared to address the issue properly. It would seem that the Government are not prepared to address the Bill as a whole. In the circumstances, I will withdraw the amendments in the same spirit.
‘() any person (other than a public body) who provides health services, or adult social care in England, to which the information standard relates pursuant to arrangements made with a public body exercising functions in connection with the provision of such services or care.’.
I am happy to present this amendment to clause 234. Before I do that, however, I would like to observe that what I believe we are trying to do in debating these clauses is to ensure that the clauses do as the Government claim in their explanatory notes and as I have explained to the Committee. The intention, and the way in which the clauses are drafted, is very clear: common law still applies, the existing data protection law still applies, the Human Rights Act 1998 still applies and the Bill imposes greater controls than have hitherto applied. To suggest, therefore, that there is some tardiness or churlishness in the way in which I have responded is unfortunate.
The purpose of amendment 672 is to make it clear that any information standards set out under clause 234 apply to any organisation providing publicly funded health or social care services, whether commissioned by or on behalf of a public body such as the NHS commissioning board, local authorities, or otherwise.