Oral Answers to Questions — Treasury – in the House of Commons at 12:34 pm on 11th March 2014.
‘(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.)
Brought up, read the First time, and Question proposed (
Question again proposed.
I remind the House that with this we are discussing 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.
I love medical data. They have undoubtedly saved my life and the lives of almost everybody in the House. Medical data, particularly big data, allow us to identify which drugs and procedures work and which do not work. They enable us to pick up the rare side effects of medications that have recently been released on to the market before they can wreak the kind of havoc that we have seen in the past. They enable us to identify which are the good hospitals and which are the failing hospitals. They allow us to identify which clinicians need serious retraining and from which clinicians the public need protection.
I would argue that evidence-based medicine is one of the greatest advances of our age. Evidence-based medicine works a lot better if we have access to big data. I state for the record that I do not intend to opt out. I hope that the Government will use the six months that we have to mount a clear campaign to the public that sets out just what the possibilities are.
I also feel that some of the concerns about releasing big data to pharmaceutical companies are misplaced. We need our pharmaceutical companies to be able to access those data, and there is a virtuous circle. We know that if we attract more research to the UK, not only will that benefit our universities, it will create more employment.
My honourable colleague from the Health Committee mentions pharmaceutical companies. Does she feel it is appropriate—we touched on this in the first part of the debate—that insurance companies have access to hospital data? As I said yesterday, BT now has access to our hospital patient data on the cloud systems in the United States. Does she think that those uses are concerning, and what should we do about them?
That is absolutely correct and I will come to those points later in my remarks. The public did not expect to see their records uploaded to insurance companies, specifically where that resulted in higher premiums for many people.
We have a virtuous circle of improving access to data for our universities and creating high-quality jobs within the industry. If we can attract research to this country, and it is carried out among the UK population, the results from that research will be more relevant to the British population. Also, less research will be carried out in circumstances that are ethically questionable or with oversight that may not be up to the standards we expect in this country, or that sometimes exploits people in developing countries and where we cannot be sure of the accuracy and reporting of that research.
This is a virtuous circle, but I am afraid it has unfortunately been broken by the oversight and some of the arrangements that have taken place in NHS England and the Health and Social Care Information Centre. It is frankly beyond me that nobody has assumed responsibility for destroying the trust in what should have been the most exciting advance that would have benefited countless hundreds of thousands of people, not only now but in the future.
On the six-month delay, I call on the Minister to set out clearly how we will campaign to inform the public of the benefits of the proposal, but also of the risks. We have seen a rather patronising approach that has assumed the public will not notice or care about those small risks, but they are there and we must set out clearly what they are and how they will be addressed and minimised. There is much more we can do to minimise those small risks.
Of course we need transparency about past errors; the performance of NHS England and the Health and Social Care Information Centre in the Health Committee was disappointing. I am glad that on its website, NHS England has now clarified that Sir Nick Partridge, former chief executive of the Terrence Higgins Trust, will conduct an audit of all previous data releases by the NHS information centre—the predecessor body. We are also expecting the release on
We must have clear penalties for breach, not only in the provisions in the Bill, but across the whole NHS and social care sector. The Minister will know that in practice, if somebody wants to snoop on someone’s personal medical data, there are far easier ways to do it. He will also know that the penalties are derisory. In a well-publicised case in December 2013, a finance manager at a general practice had been deliberately snooping on the records of thousands of patients within the practice, and focusing—rather disturbingly—on one young woman he had gone to school with and her family. Those were repeated breaches of her and her family’s privacy in a really toxic way. That individual was fined only £996. The public need to be clear that there will be severe penalties not only for individuals who deliberately breach privacy, but for companies. A fine of £996 for an insurance company or a large body is laughable.
The hon. Lady makes an excellent case. The maximum fine for an individual breaching the data clause in the situation she describes is £5,000. Does she agree that that is not adequate?
I thank the shadow Minister for making the point that £5,000 is woefully inadequate. The financial penalties—significant ones on a sliding scale commensurate with the wealth of the individuals or organisations concerned—should be set out, but I believe that people should go to prison for such data breaches. Organisations should be clearly held accountable. It should be made clear to them that, should such breaches occur, requests from them will not be looked on favourably. There should be a clear penalty. Currently, those penalties simply do not exist.
How do we explain to the public the small risks and how we will address them? One significant risk has not been covered: the powers of NHS England to direct the Health and Social Care Information Centre to collect information when it is considered “necessary or expedient”. That could include full identifiable, confidential data. Will the Minister address one point on that? I have been told that NHS England has, in meetings with senior researchers, discussed the fact that, in the next releases of care data, it plans to include free text. Free text takes us into an altogether different area, so will the Minister give categorical reassurances on it? I support the principle of a default opt-in, but might not support it if the data included free text. Free text is deeply and intensely personal data and is not coded, and the public need specific reassurances on it.
Given that the intention, as I understand it, is to create wholly anonymised data, surely the use of that contextual information creates the possibility of re-linking to an individual’s identity. The hon. Lady is right to make that point, and I hope the Minister can reassure us, but surely that is a step too far.
I agree with my right hon. Friend. Free text takes us into a different territory. People say things in free text to their doctor knowing that it will not appear in a coded form.
There are other ways in which we can improve reassurance for the public. Perhaps we could pseudonymise data before they leave the practice, which would introduce another important layer of protection. That suggestion has been made to the Minister on a number of occasions.
The hon. Lady was in the Chamber yesterday when I talked about the cloud systems using NHS patient data launched in the States. What disturbed me about that was that the commercial companies involved said that the data—our patient data that they were using—included clinical data, demographics, education and income. That provided a context, and the companies could link episodes throughout a patient’s life. People would be disturbed if they understood that companies charging for usage in another country had linked their data in that way and had almost a lifetime’s coverage of people’s medical records.
Linking primary and secondary care data is so important, but the purpose to which it is put is at the heart of the matter. To whom are the data released? If data are uploaded to Google—27 CDs of our database—and leave the premises, we have no control over them. We could not apply in the States the controls and sanctions I have described. It is simply not good enough to be reassured that the data will not be handled by Google staff. What is to stop them accessing the data when they have gone offshore? The hon. Lady is right to make that important point.
My amendments are about improving the situation in two ways, the first of which is on the purpose of the information. Will the Minister consider adding the word “improving”? He might be concerned that, if the wording is “improving health and adult social care”, the Bill could restrict open research. I do not agree. He will know that improving the care of patients is fundamentally the purpose of research. The amendment would therefore not restrict open research. The amendment would put beyond doubt the fact that the fundamental purpose of releasing data to, for example, insurance companies or Genomics UK, is improving care. People would see that the data release is not for a fundamentally commercial purpose to benefit a commercial organisation without a necessary link to improving care for people in the UK. Those questions should be asked at every stage of the process.
It was reassuring yesterday to hear the Minister clarify that insurance companies will be specifically excluded. However, there is no reassurance in the existing wording in respect of other organisations, including, for example, the Department for Work and Pensions. We can see how the case could be made that disseminating information to the Department for Work and Pensions is for the purposes of
“the provision of health care or adult social care” or “the promotion of health”, which is the existing wording of new clause 34. As he knows, the longer somebody is off work with, say, lower back pain, the less likely it is that they will ever return to work. The Department for Work and Pensions could argue that disseminating information is all about improving care, but in fact, the fundamental purpose might be altogether different. If the principle in the Bill is that information dissemination is clearly about “improving” care, it would focus people’s minds on the underlying purposes when they make appraisals about whether their information should be given out. That could happen without disadvantaging primary medical research access to the information—the principle of improving care would clearly be at stake. I hope the Minister considers adding the word “improving” to the Bill.
My amendment (b) would mean that there is a reassurance in the Bill on how the data are handled by the person receiving them. We have the reassurance of the confidentiality advisory group, but including a responsibility and a duty in the Bill not just for those giving out the information but for those receiving it would be helpful. I ask anyone following this debate to hold their fire and not to be distracted by those who are rather jumping on the bandwagon on this issue and seeking to undermine the fundamental principles behind care.data. Those principles are important and we could save countless hundreds of thousands of lives in the future by having good access to medical data. But it simply will not do to gloss over the very real concerns that have been expressed. We will see the same problems arising six months down the line unless those very real concerns are addressed. To those who are following the debate, I say, “Do not opt out.” Let us give the Government, NHS England and the Health and Social Care Information Centre the opportunity to address those real concerns and to put them beyond doubt. I will not opt out and I hope that others will join me.
In my early career, I worked as a systems programmer and engineer for IBM. I do not usually have much opportunity to mention that, but it is probably appropriate in this debate. I have been struck in recent weeks by how many people with an IT background—as well as those with medical backgrounds—have serious concerns about care.data and the plans of the Health and Social Care Information Centre.
The Minister was not keen to take interventions last night, so I will ask my questions now. I want to touch on the important issue of consent for the uses of patient data. As I said earlier in the debate, the hospital episodes statistics database was originally an administrative database. When did any of us sign up to having our data used to recalculate the cost of insurance cover for long-term illness? Given the points I made about the use of our confidential hospital patient data in commercially chargeable systems in the US, when did we sign up to have our data used on a chargeable basis by companies such as BT and MedRed on their cloud systems in the US? I do not recall doing that, and I suspect no one else does either. Does the Minister agree that patients should have the option of having their data used only for clinical care and for commissioning that care? If the genie is not completely out of the bottle yet, that is a question worth asking.
The hon. Lady is making important points about the need to be clear about what these data are used for. There is an argument that anonymised and properly controlled data have a part to play in the area of medical research. Does she think that should be out of scope, or can we have safeguards that enable it to be in scope? Understanding whether a medicine works in a particular way with a population is a very powerful use of such data. In her view, is that appropriate or not?
In the concerns I am listing, I am not touching on the use of data in medical research. My concern is about the revelations we have had in recent weeks. I am citing commercial uses. Those data are being used on a chargeable basis and the companies involved seem to be crowing about it.
Can a project such as care.data guarantee that what patients sign up to now—or at any point in time—will not mean something different in future months when new datasets are gathered? Dr Wollaston touched on some of the exciting possibilities for data, but new uses are being planned all the time. I mentioned systems in the US, but the Health Secretary recently signed a memorandum of understanding with the US Health Secretary for secondary uses sharing. The Minister last night said that he would not comment on a US system, but our hospital patient data is on those systems being used on a chargeable basis. Should patients have the right to withdraw their consent if new uses are developed that they do not approve of? The data have gone, and people are developing new uses for them, way beyond what any patient may have felt they consented to.
My right hon. Friend the shadow Health Secretary raised the issue of lack of transparency over the patient’s right to opt out. He asked about the junk mail leaflets— as they have been called—that were not even delivered to every household. What do Ministers propose to do to explain to all patients about the extraction of their identifiable personal data, and what precisely the dissent codes mean? We touched on this in our Health Committee inquiry sessions, and it was not clear, although some people thought they knew. It is a pity that Ministers have not taken the opportunity to answer the questions that were put to them in Health questions—the information changed on the HSCIC database on the very day we had Health questions in the morning.
We know that NHS England and the HSCIC can require GPs to upload patient data in an identifiable form from every GP practice in England, to be linked with the hospital episode statistics and other datasets. That is concerning enough, because it is a powerful new use of a lot of data, but the hon. Lady suggested that the HSCIC is talking about free text. That is a concern, because that is the place where people open up to their doctor and might give information that they do not want to be shared.
It is important that we know exactly how the HSCIC is funded. In the spirit of transparency, will Ministers request full disclosure of all funding sources of the HSCIC, including outside earnings from third parties for the use of data. I have talked about seeing our hospital data now being used on a chargeable basis by companies such as BT in the US. Who pays for the HSCIC’s staff? Are staff seconded to the HSCIC? Who pays the transaction costs? We have seen examples recently of networks of private organisations coming into NHS England to write and fund reports and lead consultations. Who pays for staffing and transaction costs, if it is third parties, is a key aspect of transparency.
The Health Committee has held an initial inquiry into care.data, and I and other Committee members expressed real concerns about the scheme and the impact it could have on the trust between patient and doctor. Our concerns have been compounded by news that commercial companies have been allowed to pay for NHS patient data, and use them for purposes unknown to the public. The use of our data has gone beyond our control, the data are in other countries and uploaded to cloud servers, and we do not know where they are.
My hon. Friend is making pertinent and relevant points. Does she share my concern about the need to tighten up on section 251 exemptions? They allow the use of identifiable data for commissioning purposes. NHS England was granted a 251 exemption last April, and that may lead to identifiable data being used at a national level, a regional level, in the area teams and in the clinical commissioning groups. Is that something that the Government should address?
Indeed it is. There is a question about why CCGs have to have identifiable patient data, and there is a lot of concern about that, which my hon. Friend is right to raise.
We expressed our concerns, but they have been compounded by reports of use of data unknown to the public. The Minister was unwilling to answer the point I wanted to put to him earlier in the debate about how the HSCIC will treat organisations such as BUPA, which are insurance providers as well as providers of health and care. I hope that he will answer that question when he winds up the debate. BUPA is one example, but there are other companies that have multiple functions—some of them are straightforwardly commercial and others involve health and social care—and there is scope for confusion if those firms apply for and obtain access to the data.
The revelations we have already had show that HSCIC does not have accountability, transparency or sufficient control over releases of patient data. In our Committee inquiry, it was put to HSCIC and to NHS England that one of the ways being recommended to ensure that escapes of patient data did not happen, and to allay the fears and concerns we have expressed, was for HSCIC to run on the basis that it kept the database intact and did not download datasets outside the information centre. What it did was take in research queries and ran them. That would be much safer and that is what is done on secure systems in other places. A mechanism has been suggested and I hope it is being considered.
I appreciate the comments made by my colleague, the hon. Member for Totnes about not opting out, but a recent survey of 400 GPs found that 40% intend to opt out of the scheme because of a lack of confidence in how the data will be shared.
Does the hon. Lady agree that we have an opportunity, in the next six months, to provide reassurance on some of these real concerns? Does she share my hope that GPs will change their position and that we should be doing everything we can, as opinion-formers, to encourage them to do so?
I would like to think so, but I am not going to hold my breath. I think I am a lot more pessimistic than the hon. Lady. Indeed, we know that some GPs have been so alarmed that they want to opt their patients out of the scheme. They should be able to do that without penalty. It is up to Ministers, NHS England and HSCIC to rebuild that confidence, but they are not doing so at the moment. They seem to see what is going wrong as a communication or public relations problem. It is not a communication or PR problem; it is a very serious problem with regard to the integrity of what they are doing, and a lack of transparency and accountability. We cannot say that enough times.
I have worked alongside the hon. Lady to try to improve our social care system, so does she not agree that it is important that we work on this issue so that GPs are confident about sharing data? Otherwise, how will we enable the integration of social care with the NHS in the community to give people the sort of care that I know that she and I, through all our work together in Parliament, want to see?
Yes, indeed, but I cannot emphasise enough that I do not feel much confidence at the moment and I do not blame GPs for not being confident. They are, in data protection terms, the owners of their patient data. If they do not feel that their concerns have been allayed, we have some way to go. I will touch on that point in a moment.
There are fundamental concerns on how data will be shared and the Government’s amendments do not address them. The amendments would improve Government new clause 34, but broadly it offers no further protection. It seems that data could still be released to commercial bodies, such as private health care companies that are also health insurers, the pharmaceutical industry and private health care providers. We need assurances on that. As far as I can see in this debate, we have not had them.
The Government’s new clause will actually widen the dissemination of information to include the promotion of health. Promotion of health can take in all kinds of commercial companies, for example food and drink companies that say they have a public health campaign. This will cause more problems. It draws the purposes so widely that misuses would still be permitted, and even be given a statutory basis. The requirement that the HSCIC must have regard to the advice of the confidentiality advisory group is still an inadequate protection.
I have added my name to amendments (a) and (b), tabled by the hon. Member for Totnes, because they would narrow the purposes for which data can be disseminated. However, I remain concerned about the commercial exploitation of patient data. I support new clause 25, which highlights the seriousness of the offence of misusing patient data. We need a clear disincentive for institutional abuse of confidential patient data with appropriate penalties including, as the hon. Lady said, imprisonment. Imprisonment is appropriate for the abuse of confidential patient data.
The Health Committee has started looking at these issues, but I fear that our inquiry and this debate are only the start of a necessary process of scrutiny. We will need a much longer period of consultation to get the provisions right. As a stop-gap measure, I have tabled new clause 35 as a manuscript amendment, because there is a need to ensure that Parliament retains oversight of the HSCIC. The amendment would ensure that the main powers and duties in part 9 of the Health and Social Care Act 2012 that relate to the functions of the HSCIC are all made subject to the super-affirmative resolution. That would be needed until we felt more comfortable and our concerns had been allayed.
My final point is that it is vital that the relationship of trust between a patient and a doctor is not lost. To ensure that that does not happen, patients must feel that their personal information that they disclose to a doctor will remain confidential. I do not think that people have that confidence at the moment, and much needs to happen to make sure that they will.
I was under the illusion that there would be five speakers ahead of me, but I am none the less pleased to make some comments on amendments (a) and (b) to Government new clause 34, and on new clause 25. I thank Dr Wollaston for setting the scene, and Barbara Keeley for her contribution.
My inbox, like many others, has been full with messages from various charities on different aspects of the Bill. Having sat on the Care Public Bill Committee, I can well understand many of their concerns. I received a briefing from Cancer Research UK, as many other
Members did. It was informative and clear, and raised points that I do not believe have been addressed in the Bill and require greater clarity through amendment.
Along with Cancer Research UK, I warmly welcome the clauses that will introduce the Health Research Authority as a non-departmental government body. I have the highest respect for the Minister, but last night clarity on this was sought by the shadow Secretary of State, Andy Burnham, Grahame M. Morris, Barbara Keeley and me. With respect, I do not think that Hansard gives the clarification that right hon. and hon. Members, Cancer Research UK and Macmillan are seeking. I am hopeful that the Minister will today be able to give us that assurance and clarity.
Clarification of the amendment of section 261 of the Health and Social Care Act 2012 is needed to ensure that access to data for research is not restricted on the basis of the amendment. Cancer Research UK states:
“While we appreciate the context of this amendment and understand that the motive behind it is to avoid inappropriate disclosures of data, we are concerned that the wording of this is unclear. We would like reassurance that access to data for researchers is included under ‘provision of health care and adult social care’ and that access to research data will not be restricted on the basis of this amendment.”
I hope the Minister will be able to provide assurance on that.
Cancer Research UK is one of the largest funders of clinical research in the United Kingdom of Great Britain and Northern Ireland. It is currently running more than 240 clinical trials, which in 2012 recruited some 37,000 patients. Clinical research is important to find drugs that work and treatment that saves lives. Today in Westminster Hall, we were made aware that with better access to new cancer drugs, 5,000 more people would be alive today and that many more lives could be saved. It is essential that we develop an understanding of both new and existing treatments, and that they are offered through the NHS. We therefore want to see a regulation and governance system in the NHS that promotes and supports research, while also protecting patients.
There has been significant controversy surrounding the proposed care data upload of GP records to the Health and Social Care Information Centre and there have been at least two debates in Westminster Hall on these issues where Members have expressed their concerns strongly. Concerns have been expressed that the public have been insufficiently informed about this upload and that data may be released inappropriately, for example to insurance or marketing companies. I know the Minister replied last night to my intervention, but the doubt lingers even today within Cancer Research UK, Macmillan Care and other charities that had expressed initial concerns. I have concerns regarding the nature of the release, but it was never my intention to restrict data going to the likes of Macmillan or Cancer Research UK to aid in their fight against the scourge of cancer.
I read a blog article this morning written from the point of view of people with disabilities who had real concerns about the mention of insurance providers. It is often very difficult for people with serious conditions to get insurance, even travel insurance, and the notion that their medical data are being linked to insurance information, or might be sold in future to companies that are insurance providers—even if those are health and social care providers—is a real worry for them. They are really fearful about this and I think we would see a mass opt-out by people who have that fear.
That is the issue, summed up in a couple of sentences. The Minister may look to his civil servants for some direction; he may have it already. If so, that is good news.
May I reiterate what I said many times in my opening remarks, which I hope will be helpful to the hon. Gentleman? Clear safeguards are being put in place to ensure that the data cannot be used for insurance purposes. I give that reassurance again today.
Earlier I referred to Macmillan and to Cancer Research UK who, even today, are not convinced. We make these points on behalf of our constituents and the groups that lobby us.
Does the hon. Gentleman agree with many commentators, including the British Medical Association, that it would help if the remit of the confidentiality advisory group could be extended from currently just looking at patient-identifiable data to looking at pseudonymised data or potentially identifiable data? That would give further reassurance that there is more oversight so that we do not see the kind of instances that many people are expressing concerns about.
The hon. Lady is right that the amendments would go a long way to addressing that issue. I hope that the Government take that on board.
In response to the fears expressed by many, several amendments were tabled to clarify the circumstances in which the Health and Social Care Information Centre will be able to release data. We need further clarification of the provisions concerning the dissemination of information, which suggest that the information centre may disseminate it only if it considers that doing so would be for the purposes of the provision of health care and adult social care. Clarification is needed for those charities that have contacted many of us in the Chamber. Cancer Research UK, among other worthy causes, would like reassurance that access to data for research is included on the
“provision of health care and adult social care” and that access to research data will not be restricted on the basis of the amendment. That is the reason I support the proposals.
Cancer Research UK has said that it particularly welcomes the Government’s inclusion of proposals that would give the Health Research Authority the ability to accept guidance on how the governance of particular research should be handled by the NHS trusts and their duty to adhere to it. These proposals were added following calls from Cancer Research UK and the medical research sector, and were supported by many parliamentarians during the pre-legislative scrutiny of the Bill of which I, with others, was a part.
Governance continues to be the primary barrier to conducting research in the NHS. A single trial can take place across multiple trusts, so obtaining governance approvals from each participating trust, which may have different approval criteria and often duplicate checks, can cause significant delays. New clause 25 would put in the Bill the firmness, accountability and legislative control that is necessary to ensure that the leakage, for want of a better word, of information does not take place. It is important that we do that.
In conclusion, statistics indicate that by 2020 one in two people will get cancer. We had a debate in Westminster Hall this morning on cancer care; it was passionate and well thought out by many Members with personal experience of cancer in their families and their constituencies. The enormity of cancer and what it will do to society is why we have a responsibility in the House to ensure that we help. The need for research and new treatments for cancer is greater now than ever. We must ensure that while protecting people from the unsafe or mercenary use of personal information, we are not hampering the fantastic work done by these charities to discover more about cancer and to help more people win their personal battle. I support these amendments and I ask the House to do the same.
It is a great honour to follow Jim Shannon, who touched on an incredibly important point: we must not forget the people whose lives have already been transformed by research organisations’ access to data to find cures and prevention for diseases such as cancer. There cannot be anyone in the House who has not been touched by cancer, personally or within their families. It is incumbent on us all to do everything we can to create the right ecosystem and regulatory environment to enable research that will have a life-saving and transformative effect for people.
Does my hon. Friend agree that early diagnosis is one the keys to improving cancer outcomes? By linking GP records to hospital records we can identify which practices were not referring early enough and help to improve that practice.
That is a very important point. Without the sharing of data, such patterns would not occur and we would have the much-talked-about postcode lottery whereby someone’s ability to get timed referrals and access to the best quality care depends on where they live and who their GP is.
I have the great pleasure and privilege of serving on the Science and Technology Committee. We have recently undertaken an inquiry into the regulatory framework for research into all sorts of diseases, including cancer. A very important finding of the inquiry was the essential role of sharing data. It is incredibly important that we come up with the right structures and protections to enable people, and GPs, to have confidence to enable the sharing of that data.
We should be very proud—we in the Chamber must not forget—of the fact that the UK leads the way in many areas of medical research; our universities, our trusts and our foundations are world leaders in what they do. That is very important in terms of our universities’ standing and important to a lot of high-quality jobs in our economy, not only for the benefit of citizens here but people all over the world. We must to do all in our power to maintain a system that enables money to be invested in research at our universities.
The hon. Lady is making a powerful case for the benefits of a system that would make it possible to identify hotspots of disease and carry out early interventions. I think that it could also be useful to studies of the long-term effects of medication. For instance, there was a long-term study of the link between the oral contraceptive and the incidence of particular forms of cancer. I think that such a database would be incredibly useful to studies of that kind, provided that there were the necessary safeguards in relation to privacy and access.
The hon. Gentleman has given yet another reason for the importance of collecting and sharing data in a way that helps to improve health outcomes. A further example is an inquiry into medical implants that was conducted by the Science and Technology Committee. Orthopaedic surgeons were able to keep a great many data relating to the types of implants used in, for instance, hip replacements, and to track, over time, the outcomes for the patients. As a result of that research, they were able to identify particularly problematic implants, and the information was shared among clinicians so that they could improve existing implants and develop new ones. Hip replacements have improved greatly as a result. It is vital that we establish frameworks that give confidence to patients and to medical practitioners, so that such information can be collected and used to improve patient outcomes.
The hon. Lady clearly supports such uses of the databases, but, as I said earlier, there is concern about the fact that this is going global. There are memorandums of understanding between countries, and the granting of access to one organisation seems to lead to its being granted to others. The whole thing could easily spiral out of control. Does the hon. Lady share that concern? I do not know whether her inquiry established any way of describing the system that would enable people to understand it and have confidence in it.
In many of our inquiries, we have looked into international collaborations between universities that are tackling some of the greatest challenges of our time. One example is research into various forms of dementia, and proteins in the brain that contribute not only to vascular dementia, but even to vCJD. We have concluded that in order to meet the huge challenges that those diseases pose to the whole world, we need to pool our resources across universities and research communities internationally. There is an increasing number of well-established protocols and sensible ways of reassuring patients and others about the use of their data. Such international collaboration makes it more likely that we can make discoveries that will drive improvements in people’s outcomes.
Frameworks and safeguards exist to enable universities and academics to collaborate. We should be careful about the language that we use in this context, because there has been scaremongering, and people are identifying all sorts of potential uses for the data for which there is not much evidence. We have been reassured several times today that the information would not fall into the hands of insurance companies and be used in a harmful way.
The hon. Lady is making a strong point. I visited the oesophageal cancer research unit at Southampton hospital. As I am sure all Members know, oesophageal cancer is a particularly filthy disease, and is very difficult to treat. The lack of data made it hard for those in the unit to find out what was going on, and to have more information to work on. I am glad to say that they are getting there—slowly—but I think it particularly important to note that data of this kind can be used to save lives.
We could spend a great deal of time talking about different types of medical research that are enabling huge progress to be made with particular diseases. Given the time that is available to me, however, I now want to talk about another aspect of the importance of sharing medical data to improve patient outcomes—the integration of social care with NHS services. I am sure that everyone in the Chamber would say that that was a good thing. It is important for all the services in a community, whether provided by a local council or by primary or acute care authorities, to be joined up around patients and their families to ensure that patients receive the best possible care, whatever their long-term condition may be. That is a subject that we all discuss, and on which we largely agree. However, when it comes to practical implementation, what we hear in inquiry after inquiry is that the barrier that prevents the delivery of those joined-up, improved outcomes is a lack of ability to share data.
The hon. Lady is being extremely generous in taking so many interventions. I agree with her assessment of the value of integration and better collaboration, but does she agree with me that the most important way of getting primary care on board is winning the confidence of general practitioners? One suggestion from the British Medical Association is that the Department of Health should offer GPs an indemnity against the possibility of being sued by patients who feel that their data has been misused. Does the hon. Lady think that that would be a good way of rebuilding their trust?
I think that GPs are some of the most trusted people in our communities, and that the relationship between them and their patients is incredibly special and important. I certainly have not detected any lack of trust in GPs in the course of my constituency work.
Let me tell the hon. Gentleman about a wonderful initiative that is taking place in Cornwall as part of the Government’s pioneer programme. Many organisations in various parts of the United Kingdom applied to the Government to become integration pioneers, and 14 areas were chosen. I am very proud that Cornwall was one of them.
We are blessed with a unitary authority and a commissioning group of GPs, the Kernow commissioning group. They are full of great ideas about working in new and collaborative ways to improve health outcomes in Cornwall: they are truly dedicated individuals, with an inspiring programme of change. However, all that depends on data sharing. If patients in Cornwall are to be given the joined-up care that they need, general practices must be able to share patient information with other organisations in Cornwall—organisations such as Peninsula Community Health, a social enterprise that is delivering most of our community services alongside the acute hospital, Royal Cornwall hospital, and voluntary sector organisations. They are leading the way in our pioneer bid to enable patients to live independent, good-quality lives at home.
All that great work is underpinned by the need of all those people, working together to bring about health improvements in Cornwall, to share patient information. At present the Cornwall pilot is going very well, is growing, and is supported by both GPs and patients. That leads me to believe that the relationship between GPs and others is different from the relationship described by the hon. Gentleman, in that it is based on trust.
I apologise if I did not make my point very well. I was suggesting not that there had been a breakdown between patients and GPs, but that there was a tension between GPs and the Department of Health—or, at least, NHS England—over the way in which the scheme was being administered, and that there was an opportunity for that to be corrected. That was my simple contention.
Again, I thank the hon. Gentleman for his intervention and I am sure we are going to hear more from the Minister, although we have already heard a great deal from him, about the sorts of reassurances GPs and other people have been seeking about how the data are going to be used.
It is essential that we address the fears and concerns that have been so well raised today particularly by my hon. Friend Dr Wollaston, because it is vital that people do not opt out. For all the benefits we have heard about today in improving care in our country by integrating the NHS with social care and in making sure we get the benefits from our first-class medical research, we have to have a data capture and data sharing set of regulations and behaviours among the people who are making those decisions that gives us all confidence so that we truly do derive the benefits we have heard about today.
It is very good of Mr Dorrell to drop in on us. I know he was here yesterday and we must now hear from the Chair of the Health Committee.
Mr Speaker, I take your rap across the knuckles in the spirit in which it was intended. I apologise to the House for being late today, due to a diary conflict. I hope I can claim that I do not arrive, speak and then disappear very often. My practice is to be here for a debate and to contribute and listen to it, and I apologise to the House for not matching that standard in this debate.
I am, however, grateful for the opportunity to speak in this debate, because a discussion about the way in which the health service handles data and introduces a culture that allows a freer exchange of data around the health and care system is fundamental to the delivery of more joined-up services—ultimately between the NHS and the social care sector—which is an objective that is espoused widely, and regularly repeated, in this House.
The Select Committee had a session at which NHS England gave evidence about the position it got to with care.data and the delay that was announced two or three weeks ago. Although there is a widespread view within the Select Committee that it is important to get better at handling data in order to allow the delivery of improved services, we also had a sense that NHS England, in its handling of the care.data programme, had not respected sufficiently the sensitivities both of individual GPs, as Grahame M. Morris was saying, and—more importantly, ultimately—of individual patients about the safeguards that apply to their data and the uses to which those data can be put.
I agree with the hon. Gentleman that it is important that the six months of additional breathing space NHS England has given itself is used to address those concerns, both within the service and among patient groups, about security of data and the safeguards in respect of which data are used as a result of a more open—in the correct sense of that word—use of data around the system.
As the right hon. Gentleman was not here at the time, he will not know that I moved a manuscript amendment on better parliamentary oversight of the Health and Social Care Information Centre. It seemed to me—I wonder if he noticed this, too, in our Committee inquiry—that there were a great many individuals making decisions on key issues. Questions were put to the HSCIC about the pseudonymisation of data at source, yet the answer we got back was, “Well, I’ve looked at that, and I don’t support it.” The comments were all a bit “I”, but I would like a bit more of the “We” in oversight, and not so much of the “I”.
I was told a long time ago that it is important in certain circumstances in life to be careful with pronouns. It is fair to say that in the evidence we heard last week not all the witnesses were as careful as they could have been with their pronouns. However, I do not want to follow the hon. Lady too far down that road. Instead, I want to make a couple of broader points that I think are important if we are to deliver the objective of the efficient use of data within the health and care system in a way that respects the sensitivities of patients and the people who work in the system.
In the policy arena, when we talk about data and the safeguards around data, there is quite properly an instinct to be concerned about the power of information technology to make information available on a scale that was undreamt of a generation ago and to recognise that that requires proper safeguards. The default question is:
what are the safeguards? That is a perfectly proper question, which has to be answered, but it is important that we do not lose sight of the benefits that can come from proper and efficient use of data.
I want to dwell on one illustration of that in the context of the health and care system. Traditionally we have been moderately good, in particular in the hospital service, at measuring episodes of care. What we have been almost completely blind about are the patterns that link one episode of care to another along an individual patient’s life journey. Care.data, as I understand it, is designed to address that weakness in a properly anonymised way, recognising that if we connect the patterns one episode of care is often linked to another, and another and another, in that patient’s life journey. If we are to build a health and care system that is more joined-up, to use one bit of jargon, or, to use another cliché that is often repeated, treats patients or people not conditions, we need to equip ourselves with an information system that traps, and allows us to see, the experience of those people around whom we are trying to build the system.
The current information systems available to the health and care system simply leave that gap wide open. They do not connect up the individual episodes of care experienced by individual patients. They measure the numbers of people who go in for diagnostic services or the numbers of people who are treated for a particular condition or the number of attendances of care workers at home. They measure all those things, but they do not connect the individual patient person experience through the line. Addressing that weakness is fundamental to what we are trying to do, and we must not lose sight of that in the concern we properly have about the safeguards that are required if care.data is to proceed with the public and professional support it needs.
The right hon. Gentleman is making an important point about why the programme has to succeed. Given that about 70% of what the NHS spends goes on the management of multi-morbidity—on people suffering from long-term conditions, often physical and mental—the ability to look at those data across the journeys people make through our care system is an essential part of good commissioning for population health.
The right hon. Gentleman is 100% right. That is precisely what the care.data programme is designed to address.
My right hon. Friend is rightly concentrating on the benefits of the programme. Sharing large datasets clearly has big research and integration benefits, but we now have a huge confidence problem with the programme. It will be beneficial only if it gets widespread buy-in from patients. What does he believe is the answer if we are to regain the public’s confidence?
First, we must concentrate the rationale for the programme on to patients. Looking back at how NHS England has got itself into this position over the past few weeks and months, I have lost count of the number of times I have been told how important the programme is for research. I absolutely agree that it is important for research, but the health and care system does not exist to support research; it exists to treat and care for patients. The logic of allowing commissioners to develop joined-up services that respond to individual people’s needs—and the pattern of need based on multi-morbidity to which Paul Burstow has referred—must be placed centre stage in the justification for the improved handling of data in the health and care system.
I go back to the point that this must be about treating people, not conditions. We cannot achieve that if we do not have the information to allow us to connect up the experience of the patient between one part of the system and another. In regard to the logic behind the NHS England plans, yes there is a research argument, but—with apologies to the research scientists—it is a secondary argument. The primary argument is that we must improve the services delivered to patients and service users.
Nicola Blackwood has just mentioned the need to reassure patients; that is a big concern at the moment. I have here the transcript of the information I was given in the Health Committee, in which Max Jones of the HSCIC said of the care.data programme that the GP extraction services
“took great care to make sure that we only extract the coded information in those records and not the free text notes”.
However, Dr Wollaston said earlier that there had been discussions in HSCIC meetings about extracting free text data. Is the right hon. Gentleman as alarmed as I was to hear that? Does he agree that, in the light of the need for reassurance, we do not need such revelations, news and other bits and pieces coming at us from every direction every day to make the whole fiasco worse?
I am not going to comment on whether the free text data should or should not be part of the system, or on whether the safeguards are adequate. However, I agree with the hon. Lady absolutely that the one sure way of undermining public confidence in safeguards is to change those safeguards every five minutes according to whichever witness we are listening to.
My right hon. Friend made the point that the programme is for the benefit of patients. Does he agree that it would reassure people if we made it crystal clear that it was about improving care and not about systems?
My hon. Friend is right, as she always is on these issues. This is about improving the care that is delivered to patients.
Getting away from the debate about data, I want to make my final point. We are repeatedly told that the system is too fragmented and has not taken advantage of the opportunities created by the proper gathering and manipulation of data—as other sectors of the economy have done—in order to reshape services around the needs of consumers. That is the opportunity that the proper handling of data provides, and it is hugely in the interests of patients that we ensure that we take that opportunity. We must take it, but we must do so with proper safeguards.
It is a real pleasure to follow Dr Wollaston, my hon. Friend Barbara Keeley, Sarah Newton, Jim Shannon, who made a typically excellent speech, and the Chair of the Health Committee, Mr Dorrell. I am really glad that the right hon. Gentleman did not miss the debate. The Health Committee did some excellent work in considering the issues before us, as we have heard during our debates yesterday and today.
I rise to speak to new clause 25 and amendment 29, tabled in my name and those of my hon. Friends. We are discussing these in light of clause 116, the Government’s new clause 34 and the dramatic events that have led to the cessation of the roll-out of the care.data scheme since we first expressed concerns in Committee about how the Government were treating the implementation of this vital project.
Let me be absolutely clear. Opposition Members—and, I am sure, most other Members—passionately want the care.data project to succeed. The failed implementation of the scheme to date is a matter of profound regret, and the shadow Secretary of State, my right hon. Friend Andy Burnham, has offered cross-party support to help to salvage the project. We are serious about it and we want it to work. Many individuals have real and legitimate concerns relating to the use of their private medical records, but, as the academic and writer Ben Goldacre has pointed out,
“we learn how to save lives by studying huge datasets on the medical histories of millions of people. This information helps us identify the causes of cancer and heart disease; it helps us to spot side-effects from beneficial treatments, and switch patients to the safest drugs; it helps us spot failing hospitals, or rubbish surgeons; and it helps us spot the areas of greatest need in the NHS.”
He is undoubtedly right.
A growing population, an ageing population, the rise of co-morbidities and the necessary drive to improve the quality of care and the treatments available to patients mean that the success of the NHS will increasingly rely on the data to which it has access. The care.data scheme was meant to be designed to link together medical records from general practice with data from hospital activity, eventually extending to cover all care settings in which a patient receives treatment, inside and outside hospital.
The improvement of health care depends on removing the barriers between primary and secondary care, between the GP surgery and the district general hospital and between social care providers and traditional health care providers. Integration is key to meeting the needs of patients, and the availability of integrated data is central to shaping the services that will meet those needs. It is in that context that the need for the care.data project should be seen.
Given the real and tangible improvements that such a project could provide to our health care system, as well as the clear public benefits and what I believe is genuine political consensus surrounding the project, it really is inexplicable that we should now find ourselves at this point as a result of the Government’s rank incompetence in its implementation. The tragedy is not that this failure will draw political criticism, heated argument or the condemnation of campaigners outside the House of Commons; it is that it risks the project and jeopardises the benefits that it could provide. That is the real tragedy. At stake here is the means by which we can improve the lives of millions of people. Also at stake is a way in which we can serve the people of our country by easing suffering, pain and distress. This is not simply an arid, technocratic Government data collection programme. The success of the project should be the concern of every single Member of this House. Why, then, has growing public fear about the programme led to the Government having to stop its implementation for six months? There are a number of reasons for that, and our new clause and amendment seek to address the issues that have led us to this point.
It is worth noting that many of the public and professional concerns that have led to the near-collapse of this vital project were raised in Committee. Unfortunately, the Minister described Opposition Members’ concerns as a “false debate” and a “straw man”. How he must regret those words. Had he listened to the concerns expressed by many in Committee, and had reasonable attention been paid to people with no party political axe to grind, we might well have found ourselves in a position in which the care.data scheme could have been successfully rolled out on schedule. As it is, the Minister has had to table a series of amendments to the position he was defending in Committee and, only weeks after he dismissed those widespread concerns, the implementation of the care.data scheme has ground to an enforced halt.
Given the need for the care.data scheme, and its likely benefits for patients, the Government should have adopted a profoundly different duty of care for the implementation of the scheme. The collection and use of data are becoming ever more contestable public issues. Whatever the data in question, when data relating to an individual are subject to collection, collation, analysis and investigation, individuals and society at large will always ask a standard set of questions: who wants these data; why do they want them; what will be done with them; what will the effect of this be; and in whose interests is this being done?
The sensitivity around personal information is always acute, but sensitivity and anxiety around personal medical information are understandably the most acute of all. When that sensitivity is set against the widely publicised issues relating to the National Security Agency of the United States, GCHQ in our own country and the broader emerging themes relating to how Governments in modern western democracies routinely gather and use data specific to individuals, the need for a considered, calm, detailed and honest approach to care.data could not be more important.
The communication about care.data and the provision of safeguards around it were always going to be a difficult, fairly complex task. At the heart of this issue, however, is trust. It was always going to be difficult for any Government to ask the public to trust them on a matter of such sensitivity, in particular on health policy, but for this Government that notion was destroyed as soon as the reorganisation of the health service was introduced—a reorganisation that was deliberately hidden from the public before the election and which no one wanted or voted for. That duplicity probably destroyed at a stroke the notion of trust or, at least, made it exceptionally difficult to rebuild.
From such a fragile starting point and dealing with such a sensitive issue, the Government should have taken care to be scrupulously candid at every opportunity. Ministers ought not to have claimed that the Health and Social Care Information Centre would never make identifiable patient data available to third parties, whether medical research charities, pharmaceutical companies or university research programmes. Although it is true that the data will be pseudonymised, it is still possible for individuals to be re-identified from them. To claim otherwise is simply not accurate, and I suspect that Ministers know that.
Concern about how the HSCIC deals with applications for patient data and how such data will be used is now widespread. The Chair of the Health Committee has written to the Secretary of State asking for the details of which organisations have acquired medical records since 2010. The whole country will look forward to reading the detail of the Secretary of State’s reply.
In 2012, the Department for Work and Pensions tried to obtain access to confidential patient data so that they could be linked to information about employment, tax credits and benefit claims. The request was rejected. In the same year, however, the Institute and Faculty of Actuaries received the hospital records of 47 million people from between 1989 and 2010. Also, management consultants PA Consulting Group secured the
“entire start-to-finish HES dataset across all three areas of collection—inpatient, outpatient and A&E”, and those data were uploaded to Google’s servers for use with Google’s other software. As the hon. Member for Totnes rightly pointed out, who consented to that? Perhaps the Minister can tell us when he responds.
Trust was damaged further when the Secretary of State claimed, incorrectly, that every house in the country had received a leaflet on care.data, informing them of the project, its purpose and how individuals could opt out if they wanted to. That is not true. A freedom of information request has revealed that NHS England did not ask for the leaflet to be classified as in “in exceptional circumstances”, so the leaflet has not been delivered to households registered with the Royal Mail’s door-to-door opt-out.
My hon. Friend is making a good speech and laying out the issues clearly—he is talking about the junk mail leaflet that was not delivered to every household. It also did not have an opt-out form. As a member of the Health Committee, however, I am still getting queries from people who fear that even after opt-out data will still leave their GP practice to be used by HSCIC. Do we need to be assured about that as well?
Absolutely. That is one of the real issues. As we have heard from Members on both sides of the House, absolute clarity is needed on such issues and on the data, which we as individuals own, from those who seek to provide that data to other people for other purposes. This goes to the heart of the matter, and the fundamental issue—that fundamental breach—is one of trust. My hon. Friend is absolutely right to raise that.
Trust can never be given with blind faith, but it can be built if it is based on accountability. That is what new clause 25 and amendment 29 seek to achieve. The new clause seeks to create a new, specific offence of the misuse of data provided by the HSCIC. Building on the schedule of offences in the Data Protection Act 1998, it makes it an offence to use data provided by the HSCIC for the purposes of re-identification. A person or organisation found guilty of that offence would be subject to an unlimited fine. In addition, it makes it a requirement for any organisation making applications for data from the HSCIC to disclose any previous convictions under the offence.
The purpose of the new clause is to help build public confidence in how individual patient data are used by ensuring that any person or entity who misuses the data is liable to significant criminal sanctions. Patients can then be assured that their privacy and the proper use of their medical data are of the utmost importance to Parliament, the judiciary and the NHS. The new clause would also place a duty on those convicted of misusing data to declare that conviction when reapplying for future data. In reality, barring some unforeseeable public interest, those guilty of misusing data once would be unlikely to gain access again.
In order to ensure a robust system, accountability for the use of the data must also cover those who grant permission for the data to be used. Clause 116 removes from the Secretary of State the duty to approve applications to use patient data for medical research. That is wholly and entirely wrong, and amendment 29 seeks to restore that duty.
In light of the letter from the Chair of the Health Committee to the Health Secretary, the emerging details of how patient data have been used and the rather strange pronouncement from the HSCIC that it will not say more about improper release of medical records until “later in the year”, the Secretary of State’s accountability for how patient data are used is absolutely critical. The use of patient data is a matter of huge import, and the issues surrounding it are enormous, too.
My hon. Friend is making important points and I hope that the Minister is taking note of them. Does my hon. Friend share my concern about the Minister’s assurances last night on the security of the data? The buck stops with the Health and Social Care Information Centre, not the Minister, but Ministers come and go, so it is easy to make assurances, as he might not be here next year.
I absolutely share those concerns. We did not hear anything last night that reassured anybody who understands the Bill. Certainly, Government new clause 34 is not worth the paper that it was hastily written on, and I want to move on to that right now.
Surely it is not too much to expect the democratically elected politician who sits in Cabinet and is responsible for the national health service to be accountable for how the medical data that that service captures is used. Crucially, the Secretary of State for Health is accountable not only to this House but to the people of this country in a way that a quango cannot be and has never been. Such accountability can begin the process of building the trust necessary to ensure the success of projects such as care.data. Without that, QED, the Secretary of State is asking Parliament and the people of this country for permission to remove democratic accountability from how their confidential medical data are used. The implications for the use of patient data in any project are utterly toxic.
I said earlier that it would be tragic if the Government’s failings were to continue to contribute towards the erosion of trust in care.data. Sadly, the Bill provides scope for other regrets. Part 1 seeks to make worthwhile but modest improvements to our care system, falling a long way short of the concept of whole-person care articulated by Labour. The Government new clauses and amendments that we are now discussing, however, and clause 119—the hospital closure clause that we will discuss later—fundamentally disfigure what is without doubt a worthwhile Bill. Perhaps that shows us the two sides of the coalition in the ministerial team. We shall see. None the less, it is a cause for regret.
Trust is at the heart of Government new clause 34. Yesterday, the Minister tried to reassure the House that the new clause would provide the safeguards that people require for the protection of their confidential medical data. He demonstrably failed to do that. Challenged time and again to illustrate how his new clause would facilitate the claims he has made for it, or improve safeguards for patients, he could not do so. Next time, it might be a good idea if the Secretary of State could get the same person to write both the Government amendments and the Government press release, because the amendments and the new clause do not provide what the Government claim that they will. Sadly, that erodes trust yet further.
New clause 34 has been made necessary due to the appalling handling of the care.data project by the Government and the resulting erosion of public trust. The truth is that the new clause was hastily tabled again just before the deadline for amendments because the original, botched new clause 14 did not do what the Government said it would. Guess what? New clause 34 does not do what they say it will either. Subsection (3) would amend section 261 of the Health and Social Care Act 2012 to read:
“The Information Centre may disseminate (other than by way of publication), to any such persons and in such form and manner and at such times as it considers appropriate.
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.”
Yesterday, the Minister was given numerous opportunities to explain how this provision would prohibit private health insurance companies from gaining access to our data—he could not do so. The new clause provides for entirely elastic definitions that, in practice, will have a limitless application.
What happens when a private health insurance company requests information from the HSCIC on the basis that it was going to conduct specific controlled, randomised assessments of the impact of physical activity on various age groups in order to promote and recommend appropriate physical activity to its policyholders— perhaps with a view to reducing their premiums? That is clearly being used to promote health and well-being, so how would new clause 34 stop it? It would not—under the proposed wording, it would be facilitated. Once such a company has the data, what prevents it from using them for other means? Under our new clause 25, such use would be a clear offence, but sadly the Government have offered no such safeguards.
It is no wonder the public cannot trust Ministers. Just a few weeks ago, in Committee room 9, the Minister assured me and the rest of the Public Bill Committee:
“There are strict controls about the release of potentially identifiable information; for example, that type of information would only ever be released to approved organisations for approved purposes”.––[Official Report, Care Public Bill Committee,
Yet these strict controls fail to appear time and again. The only comfort offered to the public is that those issues will be resolved by regulations drafted by Ministers in whom confidence and trust has been lost—that is not good enough. With that in mind, can the Minister explain who signed off the release of data covering 47 million patients that were obtained by the Institute and Faculty of Actuaries? Such issues must be addressed, and it seems likely that when he eventually responds to the Chair of the Health Committee, the Secretary of State will give cause for yet further concern about how patient data are being used.
In responding to the news about that massive data breach, a Department of Health source stated:
“The rules changed last year so this would no longer be allowed. Information like this can only be accessed now if there is a clear benefit to improving health or health systems.”
It is chaos: if the rules have already been changed, the new clause tabled in haste by the Minister is full of superfluous subsections. Why does he need to change the rules again if they have already been changed?
We have a golden opportunity to get this right. The more that patients allow their data to be used, the greater the positive effects of care.data. These issues will not be resolved today and they will not be resolved by any of the Government proposals before us. If we want care.data and schemes like it to work in the future, we need to establish trust. Getting this right will save lives. Accountability is critical when accessing and using the most sensitive personal data, and the whole House can send a message to the people of this country—that we understand their concerns, that we are serious about safeguarding their most private data and that we are determined to continue to improve our health services—by voting for new clause 25 and amendment 29.
I thank hon. Members for the many comments and pertinent points made during the debate, both last night and today, and I will do my best to respond to the main issues raised. In particular, I wish briefly to respond to a couple of points raised by the shadow Minister. He talked about rank incompetence, but let us remember that the previous Government wasted £10 billion on an NHS IT project that was not fit for purpose and did not work. So Government Members will take no lessons about information services in the NHS from Labour Members, given that their Government wasted £10 billion, which I would have rather seen spent on front-line patient care. Furthermore, Labour Members repeatedly raise the issue of the lack of safeguards, but they failed to put them in place when they were in government. Only this Government have put in place safeguards, doing so through the 2012 Act, which I outlined clearly in my contribution last night, and through the further reassurances provided by the proposals we are making today.
Let me deal with some of the very good contributions that have been made to the debate. My right hon. Friend Mr Dorrell made a characteristically strong contribution and we should take note of it. The purposes and benefits of the care.data programme, and of joining up and properly putting together patient data, have to be a universal good. What we do not always understand in the health service is how the different parts of the system integrate and join up together. My right hon. Friend made it clear that if we want to understand what good joined-up care and good integrated care look like, it is very important that we ensure we have the right data to understand that. If we want to know how we better keep people out of hospital and better look after people with multiple medical comorbidities—my right hon. Friend Paul Burstow discussed that—we need to understand what good care looks like, where we can make better community-based interventions and where we can put in place better care pathways to understand what that good care looks like and ensure we improve patient care. That is one of the overriding benefits and improvements that this system will put in place, and it is long overdue.
We all want to see better, more integrated care, so why did Ministers not keep a closer eye on the cock-up that has been made with care.data?
It was very clear, as NHS England has acknowledged, that the communication exercise put forward was not ideal. That is part of the reason why we are debating the issue today. I hope I have brought further reassurance to hon. Members about the fact that the 2012 Act does put in place robust safeguards, which were not in place under the previous Labour Government. We have put in place the safeguards through that Act and through the Government amendments we have tabled.
Does the Minister accept any responsibility for this near disastrous collapse of the care.data scheme, or is it all NHS England’s fault?
As the hon. Gentleman will be aware, under the 2012 Act, NHS England has responsibility for much of the operational day-to-day performance of the NHS, and NHS England has accepted responsibility for the fact that it did not communicate some of the information about care.data in the best way. But I hope that by referring the House to the safeguards we have in the 2012 Act and the additional safeguards we are putting in place through our Government amendments, we can reassure hon. Members that data will be used for the benefit of the health and care system, and for the promotion of health.
I wish now to deal with some of the good points raised in the debate and I hope to bring further reassurance to hon. Members. My hon. Friend Dr Wollaston rightly asked about an issue that came up recently in the Health Committee: whether data would be allowed to be passed on to the Department for Work and Pensions. The overriding purpose of any release to the DWP could not conceivably be the provision of health care or adult social care in England or the promotion of health so, no, that could not happen under the 2012 Act or under the provisions we have introduced today.
My hon. Friend also raised issues relating to the HSCIC and free text. As Barbara Keeley said, it was outlined in the Health Committee evidence sessions that the use of free text had been examined and had, in effect, been ruled out—I hope that my recollection is correct on that. To give further reassurance, may I say that the HSCIC made it clear that the General Practice Extraction Service that we have in place to support the extraction of the data from those GP systems for care.data has taken great care to ensure that we extract only the coded information in those records, not the free text notes, which patients may well have shared during consultations with their GPs? In addition, a number of explicit conditions were excluded from those extractions, including issues relating to HIV/AIDS; sexually transmitted infections; termination of pregnancy; in vitro fertilisation treatment; complaints; convictions; imprisonment; and abuse by others. Clear safeguards and reassurances have been established on those issues, and I hope that reassures my hon. Friend further.
Will the Minister confirm that there is no way that free text will be uploaded, either now or in the future?
As things stand at the moment, free text is not going to be used. That is the reassurance given by the HSCIC; it clearly does not envisage that text being used and it has given reassurances on that. That is reassuring for me and I hope it is reassuring to my hon. Friend. There are those additional safeguards in place, particularly for vulnerable patient groups, to make sure that more personal data about convictions, imprisonment and abuse by others will not be collected by the information centre.
I will deal first with the points made by Barbara Keeley and then I will give way. I inferred from the hon. Lady’s remarks that she thought that GPs should be able to opt out for their patients. However, we have made it clear that it is a decision not for GPs to make on behalf of their patients but for the patients themselves. Furthermore, people can, at any time, object or change their mind, and the Health and Social Care Information Centre must respect their wishes and remove their data from records.
I am grateful to the Minister for giving way. Will he clarify the point raised by Dr Wollaston in relation to vulnerable patient groups? Does that include patients with very rare conditions who could be identified, even from anonymised data, because they are part of a relatively small group?
Of course strict criteria are in place under the 2012 Act about the use of data where a patient could be identified. The Health and Social Care Information Centre cannot randomly release data that would identify patients, except where there are specific public policy reasons for doing so, such as in the event of a flu pandemic or a public emergency. There are strong safeguards in place under that legislation to protect patient data. It would be wrong of the hon. Gentleman—I know he often inadvertently misleads himself in some of his conclusions and goes around in circles in his remarks—to confuse Members and to confuse the House. The legislation is clear. He has been in many debates on the matter over the past few weeks, and strong protections are in place to protect patient confidentiality and to prevent patients from being inappropriately identified.
I do not want to be drawn into individual cases, but the hon. Member for Worsley and Eccles South also raised the issue of the MedRed BT Health Cloud, which will provide public access in the United States to 50 million de-identified patient records from the Health and Social Care Information Centre in the UK. We have clarified the matter. The data referred to are not confidential, but are published anonymous data of the aggregate population—not at patient level. The data are available freely to any member of the public or organisation via data.gov.uk. There is no conspiracy about the data; they are freely available to any one of us in this Chamber or to any member of the public.
It is worth highlighting the powers of the Secretary of State, which the shadow Minister also raised in his comments. Let me reassure the hon. Member for Worsley and Eccles South in respect of the amendment that she has tabled today. Section 245 of the 2012 Act enables the Secretary of State to direct the Health and Social Care Information Centre to establish information systems—to collect data—including systems on how to carry out that collection.
The Secretary of State can also direct the Health and Social Care Information Centre to report on any matter about its functions. If concerns were raised about the issue of free-text data, which my hon. Friend the Member for Totnes mentioned, the Secretary of State could pass on directions to the Health and Social Care Information Centre.
The Minister referred to my manuscript amendment on parliamentary oversight of the actions of the HSCIC. I tabled that amendment late because there is a belief that the Secretary of State and the Minister have not been asking the right questions. It has taken the Health Committee and other Members making inquiries to bring out all of the issues. We need to keep on doing that, which is why I tabled that important amendment. There was not time to do it in a timely way, but that is why it was done.
As a Member of the previous Government, it is a pity that the hon. Lady did not take these issues more seriously at the time. It has been left to the current Government to fix the problem during the 2012 Act and through the amendments that we have tabled today. That is not good enough and she knows it. It is also the case that she has not read the 2012 Act properly, because I have just outlined the section 245 powers that the Secretary of State has. That is parliamentary oversight in anyone’s terms.
Finally, let me turn to amendment 29 tabled by Mr Reed. As he has said:
“The importance of such data in medical research, and in the synthesis of new treatments and better care, cannot be overstated. In research terms, more information about how people with certain conditions react to treatments can led to better research being undertaken, which uses resources more efficiently and improves a patient’s quality of life.” ––[Official Report, Care [Lords] Public Bill Committee,
I completely agree with that. It is important that we uphold a person’s right to confidentiality while enabling the use of information to improve the current and future health and care of the population, with appropriate safeguards to protect confidentiality.
The Health Service (Control of Patient Information) Regulations 2002 made under section 251 of the National Health Service Act 2006 modify the common law obligations of confidentiality. It allows researchers, public health staff and other medical practitioners to access information where there is no reasonably practicable way of obtaining consent to use such information for the purposes of medical research. That is in the interests of improving patient care or in the public interest.
Amendment 29 requires the Secretary State to give approval for the processing of confidential patient information for research purposes. In January 2011, the Academy of Medical Sciences published a review of the regulation and governance of health research. It criticised the complexity of the arrangements for regulating the use of patient information, saying that they are a significant barrier to research. None of us in this House wishes to put barriers in the way of medical research. The Secretary of State has already delegated the function of the approval of processing confidential patient information for research purposes to the existing Health Research Authority special health authority. The 2002 regulations as amended by this Bill would give the new HRA this function directly.
Under this Bill, the HRA would be responsible for overseeing the ethical review of health and adult social care research. As access to patient information may involve the consideration of ethical issues, it makes sense for the HRA to make decisions on applications for access to confidential patient information for research purposes.
Robust legislative safeguards ensure approval for access to patient information for research purposes is given appropriately by the HRA. These include a condition that the HRA may approve processing of patient information for research purposes only if approval has been given by a research ethics committee, established or recognised by the HRA, and a requirement that the new HRA appoints an independent committee to provide advice on applications to process patient information. This provides continuity for the committee known as the confidentiality advisory group, which I spoke about earlier in my opening remarks.
If my hon. Friend will forgive me, I will not give way. I have only two minutes left, and I want to address some of the other points made in the debate.
The HRA was set up to streamline approvals for research. The Academy of Medical Sciences has said that the transfer of responsibility for the research use of confidential patient information to the HRA provides a good opportunity to reduce the complexity in this area of regulation and governance that has in the past led to conflicting interpretations of it by researchers, trusts, patients and other stakeholders. It brings important clarity to the people whom we care about the most—the patients and the users of our health and care services.
Given those reassurances, I hope that Mr Reed will withdraw his amendment and that Members will feel able to support the Government’s revised clauses in the interests of bringing greater clarity to safeguard patient confidentiality in the use of health and care information.
I am also grateful to my hon. Friend the Member for Totnes and other colleagues for tabling amendments (a) and (b) to new clause 34. It is clear that we share the desire that the huge wealth of data available through the health and care information system must support research to improve health and care. Although I welcome the intention behind amendment (a), which is to clarify that data should generally be disseminated only for purposes that improve health and care, the proposed wording would have the unintended effect of closing down access to data for some wholly legitimate purposes. For example, it might effectively block the Health and Social Care Information Centre from disseminating data that could be used to ensure that a particular health care service change will not have a negative impact on current levels of safety and quality of care or, worse, on the prevention of harm. I am sure that we would all want to avoid such an unintended consequence in the wake of the Francis report and the need to use health and care data properly to expose the rare examples in our NHS and care system of care that does not meet the standards we expect.
I have done my best to address many of the concerns raised in the debate. The care.data programme is a good one that we should all support. This Government, unlike the previous Government, are ensuring that we have proper safeguards in place to protect patient confidentiality.
Question put and agreed to.
New clause 34 accordingly read a Second time, and added to the Bill.
Proceedings interrupted (Programme Order,
The Deputy Speaker then put forthwith the Questions necessary for the disposal of business to be concluded at that time (