Amendment made: 676, in clause 239, page 199, line 9, at end insert—
‘( ) A request under subsection (1) may request the Information Centre to disseminate information (other than by publishing it) only if the Centre is authorised to do so by section 243 or authorised or required to do so by or under any other provision of this or any other Act.’.—(Paul Burstow.)
‘(4A) Nothing in this section shall have the effect of rendering lawful any exchange of information currently prohibited under current law.’.
The purpose of the amendment is to ensure that there is no change to the requirement for any disclosure, exchange, processing or transmission of confidential information and that the consent of the patient or lawful proxy is required unless subject to current exceptions. Again, it is an attempt to ensure that the public can be confident that the current laws of confidentiality will continue to apply under the new system that the Government want to introduce under the Bill.
The clause allows any person to request the Information Centre to establish systems for the collection, analysis, publication and dissemination of information. That includes mandatory requests from Monitor, the Care Quality Commission, NICE and any other person specified in subsequent regulations. The clause provides extremely wide powers on information sharing, and concerns have been raised that there is no reference to patient confidentiality or information governance controls on information sharing. The explanatory notes state in paragraph 1356 on page 229 that a request from a private person or body must satisfy existing regulations under section 251 of the National Health Service Act 2006. What is the definition of a “private body or person”, and why does that requirement not apply to all requests made to the Information Centre? Perhaps the Minister will explain that, because it is a potential lacuna, and we are worried about it.
This is a fundamental point regarding the protection of patient confidentiality. Patient information must remain subject to appropriate safeguards to protect confidentiality and to maintain public trust in a confidential health service. The liberal use of identifiable data described in the clause threatens the therapeutic relationship between doctors and patients, and we seek specific reassurance. When read cold, the clause seems very permissive, and is worrying.
Clause 239 enables any person to request the Information Centre to
“establish and operate a system for the collection, analysis and publication or other dissemination of information”
specified. It is worth saying at the start that the Bill does not need to set out new requirements for information governance controls, because they are already required under data protection, human rights and confidentiality law. The Bill includes explicit provisions to set information standards, which will require consultation, and cover information governance. That will become legally binding on health and social care organisations.
Amendment 660 raises issues that are already covered to some degree in clause 234. The amendment would prevent the Information Centre from accepting a request to collect anything when there is a barrier in law, and we accept that that should be the case when there are statutory prohibitions on data sharing—for example, on gender reassignment cases. As I explained, however, that would prevent the Information Centre from having a central role as honest broker for data collection and linkage that strengthens the approach to confidentiality across the system that the Government believe is desirable. It is essential to marry that role with the appropriate safeguards to ensure proper protection of patient confidentiality. I have set out the arrangements in some detail, and we will return to them on later clauses, especially clause 243 which covers specific aspects of that concern. I hope that the hon. Lady is reassured.
The hon. Lady asked specifically about definitions of “private organisations” and how they might be treated differently. I want to ensure that when we come to clause 243 I give her a clear answer to reassure her, but there is no intention that they should be treated more favourably under the clause.
Many of us are concerned about who will be allowed to get their hands on the information, who can request it, and what controls there will be. Perhaps we can debate the matter when we come to clause 243, because it throws up some important issues. I will be happy if I obtain reassurance then. I beg to ask leave to withdraw the amendment.
“direct the Information Centre to comply with a request specified in the direction which was made by a person outside the United Kingdom”
That is a bit strange, particularly given how few resources we think the Information Centre will have. Will there be any restrictions? With which requests made by foreigners from outside the United Kingdom will the Secretary of State direct the Information Centre to comply? The Minister ought to give us a little more detail about that. Will he give us an example of a reasonable request?
On amendment 661, the clause also commits the Secretary of State to direct the Information Centre to comply with a request from a person outside the UK, so will the Minister give assurances that such requests must comply with the Data Protection Act 1998? The Act is clear that personal data must not be transferred outside the European Union without adequate protection for the rights of data subjects equivalent to that provided by the Act.
The amendments relate to some important issues, but I hope I can reassure the hon. Lady and other hon. Members that they are not necessary.
Amendment 661 would ensure that the Data Protection Act applies to any request for information made to the Information Centre from overseas. I confirm that the Data Protection Act has, and will continue to have, full effect, so the amendment is unnecessary.
Amendment 663 would remove the power for the Secretary of State or the NHS commissioning board to direct the Information Centre to comply with requests from outside the UK. The power is essential to ensure the Information Centre will continue with valuable work in collaboration with the World Health Organisation and across the European Union. I reassure the hon. Lady and other hon. Members that no information that could identify individual patients or service users would be released by the Information Centre in response to such requests. Indeed, both our data protection law and our common law make it unlawful for the Secretary of State or the NHS commissioning board to direct or for the Information Centre to comply with a request to disclose information on such a basis.
I hope, therefore, that the hon. Lady is reassured and that she will withdraw her amendment.
The amendment would remove the provision to define a “relevant body” as
“such other persons as may be prescribed in regulations.”
It is another very vague statement on which it would be a good idea if we had more understanding. Will the Minister clarify the scope of paragraph (d) and assure the Committee that no regulation will be made to require the information centre to establish information systems in response to a request from non-NHS bodies such as pharmaceutical companies? Will the Minister explain the limitation of the term “system” and confirm that it could not include mandating information collection through any single or limited number of information providers such as software systems?
The amendment would remove the flexibility that is needed to add bodies able to make requests of the information centre for data collections that must be complied with.
Although there are no plans to give such authority to any other body, it is subject to change. Without the flexibility of a regulation-making power, change could only be effected through primary legislation.
At this point, I could say how interesting it is that we have had an information centre for a long time. It is established as a special health authority, so it is very much at the beck and call of the Secretary of State. Removing the flexibility that the clause provides would effectively stitch it into a legislative straitjacket. It is not worth going much further on that point at the moment, but I assure the hon. Lady that it is our intention is to keep that flexibility.
With regard to relevant bodies and the list of organisations that can make mandatory requests, the regulations will be subject to the negative procedure. Even so, such regulations are required to be laid before Parliament for a period of 40 days after being made, during which time they are subject to parliamentary scrutiny and can be debated.
The hon. Lady also expressed concern about whether private organisations would be treated any differently. Clause 240 requires the publication of procedures to be used by the information centre. We are setting it out in primary legislation for the first time. It strengthens the current arrangements, which were based on ministerial directions, and such directions did not have to be signed by Ministers. It is a significant enhancement of parliamentary accountability here, and it starts with this clause.
The question is about the scope of regulation, and which bodies will be covered. It is most likely that public bodies or bodies exercising public functions such as NICE, Monitor or the Care Quality Commission will benefit from the provisions of this clause. It is certainly not the Government’s intention to see it being used as the hon. Lady suggests.
I liked the last half of the Minister’s answer. However, the first half causes me some trouble, especially the weasel words “most likely”. May I ask the question again?
Can we be assured that there will not be regulations put in place to require the information centre to establish information systems in response to requests from non-NHS bodies such as pharmaceutical companies? If the Minister were to have another go at answering without using weasel words, I would appreciate it.
My words were certainly not as described. I was referring to the bodies most likely to be the beneficiaries of the clause; they are the public bodies that I listed a moment ago. I then went on to say that it is certainly not the Government’s policy intention to do it in the way described by the hon. Lady.
Pharmaceutical companies can request information collections, but the Secretary of State can veto them. There is no direct relationship; a pharmaceutical company could not expect anything to be done by the information centre on its behalf. The safeguards and the enhanced transparency put in place by the Bill mean that any such collections by the information centre will be published in a register. We shall come later to the clauses that deal with the fact that the information centre has to set out all the information collections that it undertakes, even if they are not published. There will be much more information about what it is doing than hitherto.
I want to put on record my concerns about this clause and preceding and subsequent clauses, and the unintended consequences that might result. Information is power. We heard from the Minister that data that are collected can sometimes be too abundant, but limitations on the data that we collect, how they are analysed and how they are disseminated can have profound consequences. For example, if data had not been available during the 1980s, publication of the Black report would have been the first time that issues such as health inequalities, socio-economic inequalities and the difference between different groups of the population, especially the north-south health divide, were raised.
Members should consider the effects of limiting the collection, analysis and dissemination of information. Members will also remember how that report was held up and published in quite disgraceful circumstances. I wanted to put that on record and to raise my concern that the Secretary of State and the information centre must have regard to the guidance.
The way in which this Bill has been presented suggests that the Secretary of State is removing political control from the NHS and its business. That is a key way in which he is having a direct influence over the data that will be collected, which, in turn, will affect policy for the NHS and what lies beyond.
I have a number of questions that follow on from points made by my hon. Friends. The establishment of the Information Centre is an excellent idea in principle and I endorse everything that my hon. Friend the Member for Islington South and Finsbury said earlier on about the intentions behind it. However, what consideration have the Government given to the fact that the work of the Information Centre might be hamstrung as the centre becomes inundated with the requests that will flow as a result of the framing of the clause, which refers to the ability of any person to make a request for information? That suggests that the Government want to be open and transparent about information and allow as many individuals in our society to request information, and, in principle, I support that. None the less, as my hon. Friend the Member for Oldham East and Saddleworth said, information in health care has the power to influence policy, unnecessarily create alarm on occasion and cause decisions to be made at all levels in the NHS that may not necessarily be borne out by further scrutiny.
What consideration have the Government given to the fact that there may be many, many requests for information and the centre, with its limited resources, may not always be able to determine what the impact of providing such information might be? What analysis have the Government undertaken to determine what proportion of the requests they anticipate will come from commercial sources? As someone who has worked in commercial health care in some fashion, I imagine that there will be myriad requests for information from commercial companies and entities. There may be many good reasons for them wanting that information, but there could be some less desirable ones, too.
The Information Centre can charge for such information. Under clause 250, the centre can charge at commercial rates for anything it chooses to provide. What provisions are in the Bill to limit the extent to which the centre is tempted, given its limited resources, to provide information for profit and to subsidise its meagre resources in these straitened economic times, perhaps not giving due consideration to the potential negative consequences of so doing?
My last point is in relation to the remark made by the Minister a moment ago. In response to my hon. Friend the Member for Islington South and Finsbury, he suggested that in the event of an information request from a commercial entity, the backstop by which the Government would stop that information going into the public domain is the Secretary of State. Although at one level it is an excellent backstop to have the ultimate wicket keeper in the Secretary of State, in a world where we have many requests, is it realistic to expect the Secretary of State or even the Department of Health to be able to intervene repeatedly? Is it not more likely that the Information Centre will have to make more of those decisions itself, with the concomitant risks that I have described?
As the hon. Gentleman has demonstrated, clause 239 requires us to read across other clauses, particularly clauses 244 and 240, to understand what is intended. That would go some way to allay, or even remove completely, the concerns of the hon. Member for Oldham East and Saddleworth about the quality and range of data that we have been collecting.
Both in the information revolution consultation, to which we will be responding shortly, but also through our actions, we have expressed our intention to ensure that much more information is readily comparable across three different domains. We have published our plans for a public health outcomes framework and we will shortly be publishing the first ever outcomes framework for adult social care. Last year, we published the first ever NHS outcomes framework.
Each of those frameworks begins the process of designing new data collections that are more attuned to measuring outcomes in the systems for which the Department of Health is responsible. To deal specifically with the questions put by the hon. Member for Pontypridd, in the first instance, the clause needs to be looked at in the context of clause 244, which requires the publication of a register of all collections that are undertaken. That will provide increased transparency: when collections have not been disseminated in any way, it will be apparent. Members and others following our proceedings will be able to ask why certain information was not released. That is a new enhancement of transparency.
Clause 240, which also relates to clause 39, is where charges for that particular purpose come into play. Clause 240 relates to supplementary matters about the publication of procedures, with regard to when requests can be made under clause 239. By setting out clearly in advance the basis on which such decisions will be made, the provisions deal, in some degree, with the hon. Gentleman’s concern about a deluge of requests and how they will be judged. It will be set out in a transparent way at the outset. There is also provision in this part of the Bill for reasonable charges. Clause 250 covers commercial charges and clause 240 refers to reasonable charges.
I hope that addresses some of the concerns raised. I have a piece of paper that was the inspiration for the question I have already answered, so I will not rehearse that again. These three clauses—we are about to come to the other two—interlock, providing greater transparency and the safeguard of not overloading the system with trivial or inappropriate requests.
That answers some of the questions I asked. My final question: does the Minister anticipate that the charging regime laid out in the regulations will be designed simply to cover the costs of the provision of that information, or does he anticipate that the Information Centre will at some point make a profit?
The Information Centre will be able to make reasonable profits from charging for its services, but these services are unlikely to include the sale of information. The information that the centre will be able to release will generally be published without charge, so it will not interact with freedom of information or the reuse of public sector information regulations. Instead, services may include advice or guidance, support for data quality improvements and so on. The Information Centre will also be expected to publish procedures that cover charges. Again, therefore, there will be greater transparency from the outset as to how those charges are framed in the first place.
Finally, the hon. Gentleman asked for an estimate of the proportion of information from commercial sources, but there is no estimate at this stage. Because there will be requirements for publishing reports, accounts and so on as time goes forward, that information will be clearly in the public domain. As I have already said, we expect that most requests will come from public bodies involved in health and social care and mostly from the Secretary of State and from the NHS commissioning board.
Does the Minister anticipate, therefore, that once the Information Centre is set up, the NHS will no longer need to buy in lots of information from other sources, as it has done over recent years from, for example, Dr Foster Intelligence? That has obviously become a profitable business as a result of NHS information. Will the provision obviate the need to employ a body such as, but not necessarily, Dr Foster Intelligence?
I am grateful for the invitation to speculate, but I will resist the temptation to answer that speculative, hypothetical question at this stage. The Bill provides for a range of scenarios, but it also sets out considerable safeguards for those scenarios. I will not speculate as to whether commercial sources of data will be used. In some cases, they may be necessary, because that may be the only way to obtain the relevant information.
We will be adjourning in three minutes, so for the benefit of hon. Members who have not been on such a Committee previously, this afternoon’s debate will finish at 4 o’clock, but that does not mean that the business will have been concluded by then. There will then be the procedure of moving amendments and clauses that we have not reached, so there may be votes after 4 o’clock. While the debate finishes at 4 o’clock, proceedings could go past 4, because of the wind-up of the rest of the business. I wanted to clarify that position, so that nobody is in the dark.