New Clause 34 — The Health and Social Care Information Centre: restrictions on dissemination of information

Care Bill [Lords] – in the House of Commons at 9:02 pm on 10th March 2014.

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‘(1) Chapter 2 of Part 9 of the Health and Social Care Act 2012 (the Health and Social Care Information Centre) is amended as follows.

(2) In section 253(1) (general duties), after paragraph (c) (but before the “and” after it) insert—

“(ca) the need to respect and promote the privacy of recipients of health services and of adult social care in England,”.

(3) In section 261 (other dissemination of information), after subsection (1) insert—

“(1A) But the Information Centre may do so only if it considers that disseminating the information would be for the purposes of—

(a) the provision of health care or adult social care;

(b) the promotion of health.”.

(4) After section 262 insert—

“262A Publication and other dissemination: supplementary

In exercising any function under this Act of publishing or otherwise disseminating information, the Information Centre must have regard to any advice given to it by the committee appointed by the Health Research Authority under paragraph 8(1) of Schedule 7 to the Care Act 2014 (committee to advise in connection with information dissemination etc).”’.—(Dr Poulter.)

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Photo of John Bercow John Bercow Chair, Speaker's Committee for the Independent Parliamentary Standards Authority, Chair, Speaker's Committee on the Electoral Commission, Speaker of the House of Commons, Speaker of the House of Commons, Chair, Speaker's Committee for the Independent Parliamentary Standards Authority, Chair, Speaker's Committee on the Electoral Commission

With this it will be convenient to discuss the following:

Amendment (a) to Government new clause 34, in subsection (3), after ‘of’, insert ‘improving’.

Amendment (b) to Government new clause 34, in subsection (3), after ‘adult social care’, insert

‘; and if it has satisfied itself that the recipient is competent to handle the data in compliance with all statutory duties and to respect and promote the privacy of recipients of health services and adult social care.”.’.

New clause 25—Misuse of data provided by the Health and Social Care Information Centre: offence

‘(1) A person or entity commits an offence if they misuse, or negligently allow the misuse of information they have requested and received from the Health and Social Care Information Centre.

(2) “Misuse” means—

(a) using information in a way that violates the agreement with the Health and Social Care Information Centre;

(b) using information in a way that does not violate the agreement with the Health and Social Care Information Centre, but that gives rise to use that is outside the agreed limits of use; or

(c) using information supplied by the Health and Social Care Information Centre in such a way as to allow or enable individual patients to be identified by a third party.

(3) A person who is guilty of an offence under subsection (1) is liable—

(a) on summary conviction, to an unlimited fine;

(b) on conviction on indictment, to imprisonment for not more than two years or a fine, or both.

(4) An entity who is guilty of an offence under subsection (1)—

(a) is liable to an unlimited fine; and

(b) must disclose the conviction on all future applications to access data from the Health and Social Care Information Centre.’.

Government amendment 8.

Amendment 29, in clause 116, page 100, line 29, after ‘Authority’, insert

‘and the Secretary of State’.

Government amendments 17, 18, 15 and 16.

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

The Government are fully committed to the care.data programme and to the core principles that underpin its use, which are to present and promote transparency in the quality of health and care services to patients and the public, while protecting their privacy and confidentiality; to promote health and care research to help us to understand how to fight disease, cure illness and improve care; and to better integrate health and care services by using the data and information to understand what good, joined-up and integrated care looks like.

The data that are collected across the health and care system in England are the envy of the world. The care.data programme, which draws on the new Health and Social Care Information Centre, offers the ability to link existing data securely and safely to produce information that can save lives, quickly find new treatments and cures, and support research to benefit us all.

I want to say at the outset that, in my view, the care.data programme is good news and offers a great deal to help to improve our country’s health and care system in a gradual and progressive way. Care.data is evolution and not something fundamentally new. We started to collect hospital episode statistics for in-patient data in 1989, for out-patient data in 2003 and for accident and emergency data in 2007-08. The aim is to add primary care data to that list in 2014.

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

I have not said anything controversial yet, so if the hon. Gentleman will let me make some progress, I will happily give way later.

To realise the huge potential of health care data, patients and professionals must have absolute trust in the way that the data will be protected and used, together with an understanding of why collecting the data on such a scale is important. I absolutely understand that many people have concerns about how the process might work, but I am confident that the Government amendments will bring further reassurance to the House about the care.data programme.

The Government fully support NHS England’s decision to delay the start of the care.data programme so that more work can be done to build understanding and confidence. NHS England will be leading that work. In parallel, having listened to key stakeholders and to discussions in this place, the Government have brought forward a package of measures, including amendments to the Bill, to respond to concerns and to give the public greater clarity and reassurance that their data are safe.

The Health and Social Care Act 2012, which established the Health and Social Care Information Centre, introduced a raft of safeguards to balance the huge benefits that linking health and care data can bring. That offered people greater protection than was previously available. It is worth highlighting some sections of the 2012 Act as examples of that.

Under section 260, the Health and Social Care Information Centre must not publish the information that it obtains in a form that would enable an individual, other than a provider of care, to be identified. Similarly, under section 261, the HSCIC cannot disseminate share data that could be used to identify an individual, other than a provider of care, except when there is another legal basis for doing so, which could happen in the event of a civil emergency or public health emergency, such as a flu pandemic. Under section 263, the HSCIC must publish a code of practice that makes it clear how it and others should handle confidential data. Under section 264, the HSCIC must be open and transparent about the data it obtains by publishing a register with descriptions of the information. Indeed, the HSCIC is currently working to ensure that it is transparent about all the data it has released to others.

Moreover, the Government have made the commitment that if someone has concerns about data being used in this way, they can ask their general practice to note their objection and opt out of the system. Following that, no identifiable data about them will flow from their GP record to the HSCIC. Directions to the HSCIC under section 254 of the 2012 Act—separate from the amendments that the House is considering—will ensure that that commitment to patients has legal force.

We are going further than that. Having listened to key stakeholders and to discussions in Parliament, we have a further package of measures that, in parallel with NHS England’s further engagement activity, will respond to the concerns that we have heard and give the public additional reassurance that their data are safe. Of course, aggregated and anonymised data, which cannot be used to identify any individual person, should and will be made generally available. Indeed, a great deal of research relies on data of this type, where researchers do not need to see any data at the individual person level. Such aggregated and anonymous data are available now, and were available previously through the predecessor body to the HSCIC.

New clause 34 sets out a number of changes to the 2012 Act which, taken together, clarify when the HSCIC can and cannot release data. The new clause expressly prevents the HSCIC from using its general dissemination power where there is not a clear health care, adult social care or health promotion purpose—for example, for commercial insurance purposes. I am happy to confirm that the new clause enables anonymised information to be disseminated under the HSCIC’s general dissemination power for a wide range of health and care-related purposes, including for commissioning for a wide range of public health purposes and for research relating to health and care services such as the epidemiological research that is needed at the earliest stages of developing new treatments.

Photo of Jim Shannon Jim Shannon Shadow DUP Spokesperson (Health), Shadow DUP Spokesperson (Transport), Shadow DUP Spokesperson (Human Rights)

Can the Minister reassure us that there will be no possibility of private companies obtaining the data and using them for their own purposes, instead of their being used for their original purposes in accordance with NHS data protection regulations?

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

I hope that I have already given the hon. Gentleman some reassurance that the data will have to be used for the benefit of the health and care service, or for the purposes of public health. They are not to be used for insurance purposes, for example. I will go on to outline some of the safeguards involved.

Photo of Barbara Keeley Barbara Keeley Labour, Worsley and Eccles South

Would the Minister like to comment on an announcement made at the launch of the MedRed BT health cloud—a cloud data system that is using our hospital episode statistics data—in the United States? At the launch, it was stated:

“People are using foreign data because it’s available. The UK made some gutsy decisions about data liberation. There’s political risk associated and they have a more tolerant climate over there.”

Will the Minister comment on the fact that we apparently have such a tolerant climate that MedRed and BT are now charging for access to our data on that cloud system in the United States?

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

I am not going to be drawn into commenting on an American system. The point is that there are strong safeguards under the 2012 Act to ensure that confidential data can be used only for the benefit of the health and care system. Of course, data that do not identify patients need to be used in a transparent way that can help to drive up care and services.

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

I have been generous in giving way to the hon. Lady; I hope that she will let me address her point. It is important that we have data that are open and transparent and that are used to expose the quality of care that is available from different health care providers. We are one year on from the Francis inquiry, and we need open and transparent data in order to understand and compare the quality of care services in hospitals and in different NHS health and care providers. This is about helping us to recognise what good care looks like, so that we can extend it throughout the system. It is also about exposing the few examples of bad care in an open and transparent way. If we had—

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

I am not going to give way. I am still addressing the hon. Lady’s point, and I am not saying anything controversial. If we had had better, more joined-up data that could have been used in a more transparent way beforehand, we might have been able to head off the events that we saw at Mid Staffs much earlier. This is about protecting patients and the public, and about using population-level data in an open and transparent way. Under the safeguards that we are introducing in the new clause, data will not be used for commercial insurance purposes. Let me give that reassurance.

Photo of Andy Burnham Andy Burnham Shadow Secretary of State for Health

Where in the new clause does it say that? Nowhere does it say that the data cannot be passed to private health insurance companies. Proposed new subsection 1A states that such information could be passed on

“for the purposes of…the provision of health care or adult social care”.

This is a very wide provision, and I see no clarity in it that delivers on the commitment that the Minister is giving to the House.

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

Hopefully, if I am allowed to make some progress and address the points that have been raised, I will give further reassurances a little later. It would be useful—[Interruption.] I will answer the question a little later, so there is no point in heckling or being abusive. If the right hon. Gentleman will wait, I will talk him through the Government’s amendments so that he can gain a better understanding —

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

No, I am not afraid to give way. The hon. Gentleman should sit down, because he often has quite enough to say, and it is not always a very valuable contribution. In this context, he may do well to listen to some of the purposes of the amendments. As I have already outlined, there are strong safeguards set out in the 2012 Act on how data can be used. Data can be used only for the benefit of the health and care system. In order to reassure the public, we have tabled amendments to clarify further how data may be used.

Speaking to a great many people in recent days, as well as considering amendments tabled by other Members, has prompted the Government to re-table the new clause in order to clarify that these kinds of data may also be disseminated for other wider public health purposes, such as research into environmental factors associated with asthma, or for healthy eating. We have ensured that those other kinds of research can benefit from the data by changing the wording in the new clause to make it clear that information may be disseminated for the purposes of

“the provision of health care or adult social care” or “the promotion of health”. I am sure that the House will agree that it is essential that that valuable data resource is available to support a broad range of health research.

New clause 34 clarifies that in disseminating information, and indeed in carrying out any of its functions, the Health and Social Care Information Centre must have regard to the need to promote and respect the privacy of those receiving health services and adult social care in England. It also requires the HSCIC to take into account advice from the advisory committee that the Health Research Authority is required to appoint under paragraph 8 of schedule 7 to the Bill. The advice from that committee, known as the confidentiality advisory group, will provide a new level of independent scrutiny of the HSCIC’s decisions to publish or disseminate information.

Amendment 17 would also enable the confidentiality advisory group to advise the HSCIC on the exercise of functions conferred in regulations under section 251 of the National Health Service Act 2006, or more generally on decisions to disseminate information that could be used to identify individual patients. For example, when new regulations are made under section 251 of the 2006 Act that confer functions on the HSCIC, the confidentiality advisory group could advise the HSCIC on proposals to release data. New clause 34 requires the HSCIC to have regard to that external advice on its exercise of any function under the 2012 Act of publishing or otherwise disseminating information.

Amendment 18 gives the Secretary of State regulation-making powers to set out the specific criteria that the confidentiality advisory group will be required to take into account in giving advice to the Secretary of State, the Health Research Authority or the HSCIC in carrying out their duties. That provision is intended to enable regulations which would require that the confidentiality advisory group considers: that the purpose for which the data will be used should be in the public interest and for the provision of health and care services; that any approved processing must respect and promote the privacy of patients and care service users; that the purpose cannot be achieved using suitably anonymised data, rather than identifiable data; that it is not reasonably possible to gain explicit patient consent to achieve that purpose; and that the applicant requesting the data has not misused those kinds of data in the past.

That last criterion would effectively introduce a new “one strike and you’re out” deterrent. Potentially, for some organisations, the risk of no longer being able to access those kinds of data may prove a more effective sanction than the current maximum monetary penalty of £500,000 that can be imposed under the Data Protection Act 1998. Taken together, those measures provide an additional level of scrutiny and assurance to the processes of the HSCIC in publishing or disseminating information. The Government’s amendments—new clause 34 and amendments 17 and 18—provide robust assurance that those kinds of data cannot be disseminated for purposes such as commercial insurance or for assessing an individual’s mortgage application.

Photo of Andy Burnham Andy Burnham Shadow Secretary of State for Health

Before the Minister sits down, I would be very appreciative if he could direct me to the precise part of new clause 34 that prevents a private health insurance company accessing data.

Photo of Daniel Poulter Daniel Poulter The Parliamentary Under-Secretary of State for Health 9:30 pm, 10th March 2014

It is clear that the information can be used only for the benefit of the health and care service or for the purposes of promoting health. It is about benefits to the NHS or to the health and care system. That is also what the 2012 Act identifies regarding provision of data. Let us not forget that we had to put safeguards in place because at no point did the previous Government place any restrictions on the use of data. Under the previous Government’s regulations, before this Government came to power, there was greater potential for abuse of the system. Although I am sure the previous Government would not have intended data to be used by private health care companies for insurance purposes or by others, less rigid safeguards were in place to prevent that from happening.

This Government, both with the amendments and the 2012 Act, have clearly stipulated that the information can be used only for the benefit of the health and care system or the health service. That is very clear and the previous Government never put such a provision in place. This Government have also given patients an opt-out in the use of data—something the previous Government never properly put in place. We have introduced good provisions about protecting confidentiality and using information in the NHS in a responsible manner. If the previous Government had been concerned about the use of data, they should have put in place more robust safeguards when they were in power, but they did not.

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

No, the hon. Lady has had many interventions; I have been very generous—[Interruption.] I know she does not like hearing about Labour’s record in government on these issues, but I am afraid she needs to. This Government are putting in place safeguards to protect patient confidentiality. The previous Government failed on that agenda, and I am proud that we are able to table these amendments, which will lead to greater reassurance.

The amendments also help to clarify how data can be disseminated to support research for health and care commissioning, health and public health purposes, medical purposes, or other purposes relating to the provision of health care, adult social care or the promotion of health.

Government amendment 8 relates to the remit of the Health Research Authority. It has always been our intention that the HRA’s functions relate to health research and adult social care research, and the amendment clarifies that remit. It makes explicit that the HRA’s functions do not generally extend to research that relates to children’s social care, if that research is solely for the purposes of children’s social care. We must recognise that research may take place across the boundaries between health or adult social care and children’s social care, and the amendment will not inhibit such research. Although the HRA’s functions will not generally extend to children’s social care, the research ethics committees that the HRA establishes or recognises under clauses 113 and 114 will be able to consider children’s social care research in the round when considering a study that also involves health research or adult social care research.

A lot of research crosses health and social care, and some of it involves children. Where such research includes health elements, it already comes to the HRA special health authority for ethical consideration. Many university ethics committees accept HRA ethics committee approval and do not require separate approval by their own ethics committees. That will continue when the HRA becomes a non-departmental public body.

Paragraph 12(5) of schedule 7 gives the HRA a general power to do anything that appears to be necessary or desirable for the purposes of, or in connection with, the exercise of its functions. That power means that HRA can, if it feels it necessary or desirable, publish guidance that relates to children’s social care research where there is also an adult social care element or a health element that falls within the HRA’s remit.

Photo of Barbara Keeley Barbara Keeley Labour, Worsley and Eccles South

On a point of order, Mr Speaker. I understood that this debate was scrutiny of the remaining stages of an important Bill. The Minister seems to be reading his speech into the record, which for me does not stack up as a debate on the remaining stages of a very important Bill, and an aspect of it—care data—that is crucial to every NHS patient in the country.

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

Indeed, Mr Speaker, and I hope that other Members will also be sensitive to that. The more interventions I take, the less opportunities there are for Members to speak. I have been very generous. I have taken interventions on a number of occasions from those on the shadow Front Bench, and from Barbara Keeley and others. I have been generous with my time, but I want to preserve time for other Members to contribute to the debate, as I see you are keen for me to do, Mr Speaker.

Although the HRA amendments are important in ensuring that its remit is clearly and accurately defined, it will be able to work with those with an interest in children’s social care research when research crosses boundaries, to seek consistency in standards and to avoid unnecessary duplication.

Government amendments 15 and 16 are minor and technical. Amendment 15 is consequential to the addition of provisions on the better care fund—part 4—in Committee. It ensures that provisions on commencement cover the better care fund. Amendment 16 removes the privilege amendment inserted in the other place in accordance with the Commons’ sole privilege to deal with monetary matters.

The Government’s proposals ensure that we correct the difficulties we inherited from the previous Government in preserving confidential patient data. They ensure that we have in place a system in which NHS and care data must be used for the benefit of the health and care system and for public health purposes. They put us in a much better place to ensure that we enhance transparency and better use information to benefit patients. They ensure that we have a better basis on which to understand the basis of disease. If in the first place we had had the Health and Social Care Information Centre and the benefits we know will come from care.data, we would have been able to deal with and better combat many diseases while protecting patient confidentiality. We would have understood much more quickly the dangers of thalidomide and other drugs that were harmful to babies in utero. We would have been in a much better place to expose those examples of poor care, such as Mid Staffs; to develop national frameworks for treating diseases such as chronic obstructive pulmonary disease and heart disease; and to understand what good care looks like in the treatment of those conditions by collecting data in a fundamentally better and joined-up way.

The Health and Social Care Information Centre will, for the first time, provide us with a repository for joined-up, integrated data across health and care. Hon. Members often rightly talk of integrated care, and of the benefits of joining up health and care. Unless we have the data collected to understand what good integrated care looks like, and unless we understand what measures of integration are right, we will not be able properly to inform the debate on delivering integrated care or break down the silos that have sometimes existed to the detriment of patients across the health and care system. I hope hon. Members on both sides of the House can support that. I hope they decently recognise that this Government have put in place not just a patient opt-out if they do not want their data to be shared, but strong safeguards—much stronger safeguards than the previous Government —to protect patient confidentiality.

Photo of Grahame Morris Grahame Morris Labour, Easington

In principle, I support the utilisation of truly anonymised patient data sharing for the purposes of improving public health, but I take issue with a number of the Minister’s points, not least in relation to new clause 25, tabled by my hon. Friend Mr Reed. Accountability is important. If the Minister and the Government are serious about addressing the public’s concern, they would ensure that the Secretary of State and Ministers are responsible rather than an unelected quango. Frankly, the Minister’s assurances at the Dispatch Box this evening, and those given to the Health Committee just a week or two ago, need to be in the Bill, so that there is a level of accountability and some comeback.

When we debated patient data sharing in Committee and, more recently, in Westminster Hall, my impression was that Ministers have tended to conflate legitimate patient privacy concerns, which are shared by hon. Members and members of the public, with the general lack of support for the utilisation of patient data for further research. They are mistaken, because right hon. and hon. Members are more or less unanimous in supporting any move that can lead to better research, improved care and increased safety.

Photo of Barbara Keeley Barbara Keeley Labour, Worsley and Eccles South

I am grateful to my hon. Friend for giving way, because the Minister was clearly frightened of answering questions from me and from my right hon. Friend the shadow Health Secretary. The Minister refused even to listen to the question, so I shall ask my hon. Friend: does he think that there is scope for confusion because some companies are in the market of insurance products and health and social care? The Minister would not take the question, so we do not have any answers on how a firm such as BUPA, which is already involved in research and already using the data, could be dealt with.

Photo of Grahame Morris Grahame Morris Labour, Easington

That is a perfect example and an important question that the Minister and the Government should answer. If we are to ensure that we have public trust in the data and who will use them, such questions must be answered and people be given the opportunity to consider what the Government propose.

It has become clear in recent months that the public lack confidence that the implementation of the care.data scheme as currently proposed would protect the data from inappropriate use, not least because of the point that my hon. Friend has just made. I am sure she would recall that we recently had a Health Committee session on this issue—in fact, the Minister was present—and certain assurances were given, not by the Minister but by one of his officials, that companies outside the

United Kingdom would not have access to such data. The thought ran through my mind that many private health companies are global in their operations.

Photo of Andy Burnham Andy Burnham Shadow Secretary of State for Health

To add to the theme that my hon. Friend is developing, is not one of the problems with care.data that we have had so many statements from Ministers and officials that have not in the end come to be true? At the last Health questions, the Secretary of State said that a leaflet would be sent to every home in the land to explain what was happening. That also was not true. Does my hon. Friend agree that this is bringing the whole scheme into disrepute?

Photo of Grahame Morris Grahame Morris Labour, Easington

My right hon. Friend has hit the nail on the head, because there has been a catalogue of mismanagement. What we need to do if we believe in the importance of such a database is to ensure that we rebuild public trust. The Government have an opportunity to do that, but it will not be a simple matter. We have to look carefully at the implications of what the Government propose and give the necessary assurances.

The assurance that the official gave to the Health Committee had a gap that a coach and horses could be driven through. Several multinational companies could get round it by establishing a subsidiary based in the UK that would have access to the data, if that were the only safeguard.

Photo of Stephen Dorrell Stephen Dorrell Chair, Health and Social Care Committee, Chair, Health and Social Care Committee

I want to return to a theme that we were discussing in an earlier debate this evening. The true nature of the hon. Gentleman’s concern is unclear. If his concern is that sensitive patient information should be made available only on the basis that the identity of the individual can never be traced and the data remain properly anonymised and confidential, I think that concern would be shared on both sides of the House. But is that his real concern, or is it that the information might be used by a private sector body for the purpose of improving the delivery of health care? I am not clear, provided that the information is anonymised and patient identity is properly secured, what his objection could be.

Photo of Grahame Morris Grahame Morris Labour, Easington

I thought I was being fairly clear. In the debate on the earlier group of amendments, we discussed the privatisation of the clinical commissioning function. My concern is that that would lead to greater fragmentation, not greater co-operation. On data sharing, I think it was my hon. Friend Liz Kendall who gave the example of a questionnaire she was asked to fill in by her GP, which contained questions relating to alcohol consumption, smoking and so on. If that information was made available to a private health care company and, as a consequence, premiums were increased, people would have concerns. The Minister said that that has been ruled out and that it would not happen, but it is an example of why such concerns have been raised.

Photo of Oliver Colvile Oliver Colvile Conservative, Plymouth, Sutton and Devonport

It is very important for there to be as much protection for the individual and the patient as possible. I assure the hon. Gentleman that my medical records are particularly uninteresting, but I would not want them to be leaked to an insurance company seeking to make money out of them or trying to change my premium. I am sure that that is very important in people’s minds.

Photo of Grahame Morris Grahame Morris Labour, Easington

The hon. Gentleman makes an interesting point which echoes a point made on the Labour Benches a few moments ago. The problem is that a number of private health care companies are also insurance companies, so it would be quite a task to ensure that data are not shared with companies that might have a commercial interest in them. To restrict access in the way we would all want is not as simple as the Government would have us believe.

Photo of Andrew George Andrew George Liberal Democrat, St Ives

The hon. Gentleman and I often agree on these issues, but I am slightly concerned. Of course we want reassurances, and while we have the pause we should seek further reassurances on the anonymisation of data and that they will not be misused. How far is he prepared to push this point? Is he prepared to push it to the extent that the initiative falls, with all the consequences for the lack of progress in advances in medical care? In 10 years’ time we could be talking about hundreds of thousands of lives that could have been saved as a result of pressing on with this very important development.

Photo of Grahame Morris Grahame Morris Labour, Easington

The hon. Gentleman makes an excellent point. It is not my intention to do that, but we have to recognise that the public awareness campaign—the Government’s early assurances about leaflets and letters—has been wholly inadequate. At a time when it is important for the Government to instil public confidence in the scheme, they keep doing things that undermine public confidence, for example by giving the hated company Atos—if you do not mind me using the term, Mr Speaker, because of the debacle in the Department for Work and Pensions—the contract to extract the data. There seems to have been a catalogue of errors.

I accept that this proposal has the potential to be a huge step forward. The Minister said it was not revolutionary, but I am quite often in favour of things that are revolutionary. It is revolutionary, because previous data collections from a hospital-based setting, from secondary care, have been largely episodic. This scheme will harvest data from GPs and primary care to follow the whole of the patient journey, and to identify trends and follow-ups. That is a revolutionary step forward, provided we have the necessary safeguards and assurances, and that we rebuild public trust. I am not suggesting that the scheme is unworkable and cannot be reformed, but there is a huge job to do to ensure that we restore public confidence.

Photo of Grahame Morris Grahame Morris Labour, Easington

I wanted to mention an example that has been presented to me in relation to rare illnesses. It is suggested that a patient could never be identified from the data, but identification might be possible in the case of very rare conditions, particularly if pharmaceutical companies had their own databases. We need some form of protection to cover those circumstances as well.

Photo of Barbara Keeley Barbara Keeley Labour, Worsley and Eccles South

I thank my hon. Friend: he is being very generous in giving way. Does he agree that scope is an issue? The Hospital Episode Statistics database was an administrative database, and that is what our data were being used for. My hon. Friend has made an important point about the loss of trust. When did any of us sign up to having our data used to recalculate the cost of insurance cover for long-term illness? When did we sign up to have it sold on a chargeable basis by BT and by MedRed, on its cloud system in the United States? Once control has gone, it is possible for the scope to vary all over the place.

Photo of Grahame Morris Grahame Morris Labour, Easington

That is a good point. It is very important for the Government to lay down parameters for the scope.

The sharing of medical data has a fantastic potential to do good, as long as the necessary safeguards are there, but if it is mishandled, it also has the potential to do great harm. Patient data consist of very confidential information, which could prove damaging to the public if it were to end up in the wrong hands. We have already seen examples of that. I share the public’s fear that the Government are not seeking appropriate safeguards in respect of highly personal and sensitive information. Despite the Minister’s assurances about new clause 34, I do not think that it goes far enough.

Let me return to the issue of accountability. The benefits for companies that seek to misuse or leak patient data, for example, are considerable. The Minister has ruled out insurance companies, but I am worried about private health care firms. The pharmaceutical industry could profit from the re-identification of patient records, and I believe that the absence of parliamentary accountability to which I referred earlier, and a lack of clear and harsh penalties for those who misuse data, are undermining trust in what could be a highly beneficial scheme. Subsection (2) of new clause 25 defines misuse, and subsection (3) gives an indication of the penalties that would be applied. I think that they might act as a deterrent.

Photo of Jamie Reed Jamie Reed Shadow Minister (Health)

My hon. Friend is making an excellent, intelligent and informed speech. The charge has been made that pushing our proposals too far risks scuppering the project, but is it not the case that the more safeguards we can introduce to reassure the public, the better the prospects of its success will be—and, moreover, the greater the data sample will be, and the better the system will be as a result?

Photo of Grahame Morris Grahame Morris Labour, Easington

I entirely agree. I think that that is vital, because, as we have seen in the case of politicians following the expenses scandal, once public trust has been lost, it is a huge task to win that trust back. There is a mountain to be climbed. I therefore think it important that we get this right.

The Government have an opportunity to pause the implementation of the Bill in order to consult properly, and, in the Bill itself, to address issues that have been raised by Members in all parts of the House and by other interested parties. I believe that if there is to be public confidence in the scheme, the Government should make a gesture by supporting Labour’s new clauses, particularly new clause 25. Given that the misuse and identification of data are the prime concerns of the public, I think that it would be eminently sensible to make them an offence. That is not rocket science, is it? If that is the problem, why do we not address it directly by creating an offence? Similarly, if an organisation makes applications for data from the Health and Social Care Information Centre, it should have to disclose any previous convictions under that offence. I am a big supporter of transparency and the extension of freedom of information. Private health care companies should disclose information that is relevant in those circumstances.

It seems bizarre to insist that the public should allow their private information to be shared with organisations that are allowed to hide their chequered pasts in some cases behind the cloak of commercial confidentiality. Parliamentary accountability, too, should be introduced to the decision-making process. The Secretary of State should retain the duty to approve any applications. The buck should stop with the Secretary of State. If there is a serious commitment to win back the public’s trust on care.data, the buck should stop with the Secretary of State, rather than with a big and unaccountable quango.

It would be of great benefit to the public if data sharing were exercised in an accountable and secure manner. I have always been an advocate of investment in public health. For that to be effective, we need an evidence base on which to plan interventions. The scheme is set to be disrupted unless the Government can demonstrate that they are serious about protecting patients’ privacy.

Photo of Oliver Colvile Oliver Colvile Conservative, Plymouth, Sutton and Devonport

Does the hon. Gentleman think that there will be a problem with patients sharing that information with their pharmacists if that meant that they were going to get better more quickly?

Photo of Grahame Morris Grahame Morris Labour, Easington

On an individual basis, I do not see a problem with that. The problem arises when dealing with large volumes of harvested data that include not just primary care records of patients in the community but hospital records, where pharmaceutical companies are perhaps able to benefit. Whether that is in patients’ best interests needs further consideration. I do not think that there is any such concern about individual conversations with GPs or pharmacists, but there are still major holes in the Government’s proposals. They need to be tightened further. A good starting point would be Labour’s new clause 25.

Photo of Paul Burstow Paul Burstow Liberal Democrat, Sutton and Cheam

The hon. Gentleman has been incredibly gracious in giving way on several occasions. He has said that new clause 25 should be commended. I wonder whether he has considered amendment (b), which suggests that one of the other issues about safeguarding data is people being satisfied of the competence of the organisations that will receive that data and that they comply fully with the data protection obligations.

Photo of Grahame Morris Grahame Morris Labour, Easington

I have considered that, and that is an important point. Compliance is important. Those issues should be addressed in the Bill. If we are to ensure that there is public trust, those points must be addressed.

Photo of Jamie Reed Jamie Reed Shadow Minister (Health)

Does my hon. Friend share my concern and that of many GPs that the lack of necessary safeguards in the Bill may have an unintended consequence, particularly among the hardest to reach groups in society?

Fear about the lack of safeguards in the Bill may stop them from accessing GPs and sharing their details and problems with them.

Photo of Grahame Morris Grahame Morris Labour, Easington

That is a huge danger. We have an opportunity to address that in this House this evening and when we consider the Bill further tomorrow. I personally am not advocating that people sign up to the opt-out clauses. That is important, but we need assurances to be able with confidence to support the Bill and the data collection proposals.

Several hon. Members:

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