Care Bill [Lords]

Sarah Newton Excerpts

Tuesday 11th March 2014 Commons Chamber

[Barbara Keeley]

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.

[Sarah Newton (Truro and Falmouth) (Con)]

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?

[Barbara Keeley]

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.

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[Jim Shannon]

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.

[Sarah Newton]

It is a great honour to follow the hon. Member for Strangford (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.

[Dr Wollaston]

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.

[Sarah Newton]

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.

[Grahame M. Morris]

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.

[Sarah Newton]

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.

[Barbara Keeley]

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.

[Sarah Newton]

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.

[Mike Thornton (Eastleigh) (LD)]

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.

[Sarah Newton]

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.

[Grahame M. Morris]

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?

[Sarah Newton]

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.

[Grahame M. Morris]

I apologise if I did not make my point very well. I was suggesting not that there had been a breakdown of trust 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.

[Sarah Newton]

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 the Member for Totnes (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.

[Several hon. Members]

rose—

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[Dr Poulter]

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 through the 2012 Act and 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 the hon. Member for Copeland (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, 30 January 2014; c. 513.]

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.

[Sarah Newton]

rose—

[Dr Poulter]

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 the hon. Member for Copeland (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.

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[The Secretary of State for Health (Mr Jeremy Hunt)]

I beg to move, That the Bill be now read the Third time.

The Bill will bring about the most profound change in the care system for a generation. It provides certainty on care costs that has never been available before; independent and transparent inspections to drive up the quality of care; integration of the health and social care in a way that has been talked about for years but never delivered; and real patient empowerment to put people firmly in the driving seat for their care planning.

The Bill will also implement or help to implement many key recommendations made in the Francis report following the shocking failings at Mid Staffordshire NHS foundation trust. We are also establishing vital new principles for dealing with failure where it occurs, most notably the requirement and ability to deal with unsafe care quickly before lives are lost unnecessarily.

I thank all those who have been involved in considering and scrutinising the Bill, including my predecessor, who was responsible for originating it, together with my right hon. Friend the Member for Sutton and Cheam (Paul Burstow). I particularly wish to thank the Minister of State, Department of Health, my hon. Friend the Member for North Norfolk (Norman Lamb), and the Under-Secretary of State for Health, my hon. Friend the Member for Central Suffolk and North Ipswich (Dr Poulter) for their herculean efforts in Committee and today to ensure that the Bill returns to the other place in the best possible state. There was a well-informed and rich debate on this landmark piece of legislation, for which I thank Members on both sides of the House.

We know that in the next 20 years, 1.4 million more people are likely to need care and support. The Bill prepares our country for that change with the most comprehensive reform of social care legislation in more than 60 years, creating for the first time a single, modern statute for adult care and support that is focused around the person, not the service. Meanwhile the new £3.8 billion merger of health and care services will allow the delivery of seamless, co-ordinated, whole-person care for those in need. In doing so, we will be realising a vision that was talked of for 13 years by the previous Government and actioned in three by this one.

Crucially, these reforms make a reality of the proposals of the Commission on the Funding of Care and Support, chaired by Andrew Dilnot. Many older people and people with disabilities face catastrophic and potentially ruinous bills for their care and support. The Dilnot commission judged quite simply that the current funding system is not fit for purpose. The Government have listened to the commission’s advice, have acted, and are implementing its recommendations. For the first time, a cap on care costs at £72,000 in today’s prices will provide protection to every single person in England. People who have worked hard all their lives need no longer fear that they will lose everything just because they are unlucky enough to develop care needs beyond any reasonable budget.

The difficult decisions the Government have taken on public spending have enabled us to pledge £2 billion per year to fund this cap, from which more than 100,000 people will directly benefit financially. What is more, we are raising the threshold for the means test for help with residential care, so that in 2016-17 alone, up to 35,000 more people will receive support with their care costs. Our universal deferred payment scheme will put an end to people being forced to sell their homes in their lifetime to pay for their care.

People often enter care at a point of crisis, and at a time of great distress. These reforms will create a better, fairer system, enabling people to grow old, safe in the knowledge that they will receive the care they need without facing unlimited costs. Combined with the Government’s wider moves to protect pensions and improve care standards, we are determined to fulfil our vision to make Britain the best country in the world to grow old in.

[Sarah Newton]

I had the great privilege to serve in Committee, during which the Minister of State, Department of Health, my hon. Friend the hon. Member for North Norfolk (Norman Lamb) expressed support for my view that if the pilots prove successful, we should be able to provide free social care at the end of life to allow more people to die with dignity at home. Would my right hon. Friend commit to that this evening?

[Mr Hunt]

I thank my hon. Friend for her work in Committee. That is an aspiration that we all share, and some of the results from the pilots are extremely encouraging in terms of the extra care and support we are able to give people. End-of-life care is a priority for everyone, so I share her enthusiasm that we can make progress on that very important area.

Financial security must be combined with confidence in the standard of care received. A year on from the Francis report, we are debating a Bill that will help us to deliver 61 commitments that we made in response to it. We are restoring and strengthening a culture of compassionate care in our health and care system.

Robert Francis’s report said that the public should always be confident that health care assistants have had the training they need to provide safe care. The Bill will allow us to appoint bodies to set the standards for the training of health care assistants and social care support workers. These will be the foundation of the new care certificate, which will provide clear evidence to patients that the person in front of them has the skills, knowledge and behaviours to provide compassionate high-quality care and support.

New fundamental standards will ensure that all patients get the care experience for which the NHS, at its best, is known. In his report, Robert Francis identified a lack of openness extending from the wards of Mid Staffs to the corridors of Whitehall. We want to ensure that patients are given the truth when things go wrong, so the Bill introduces a requirement for a statutory duty of candour which applies to all providers of care registered with the CQC. The Francis inquiry also found that providing false or misleading information allows poor and dangerous care to continue. We want to ensure that organisations are honest in the information they supply under legal obligation, so the Bill introduces a new criminal offence for care providers that supply or publish certain types of false or misleading information.

The care.data programme will alert the NHS to where standards drop and enable it to take prompt action. To succeed, it is vital that the programme gives patients confidence in the way their data are used. For that reason we have today amended the Bill to provide rock-solid assurance that confidential patient information will not be sold for commercial insurance purposes.

Patients also need to have confidence that where there are failings in care they will be dealt with swiftly. At Mid Staffs that took far too long. That is why the Care Bill requires the CQC to appoint three chief inspectors to act as the nation’s whistleblowers-in-chief. Their existence has started to drive up standards even in the short time they have been in their jobs.

Perhaps most fundamentally, the Bill re-establishes the CQC as an independent inspectorate, free from political interference. The Bill will remove nine powers of the Secretary of State to intervene in the CQC to ensure that it can operate without fear or favour. The Bill will also give the CQC the power to instigate a new failure regime and will give Monitor greater powers to intervene in those hospitals that are found to be failing to deliver safe and compassionate care to their patients. For the most seriously challenged NHS providers, there needs to be a clear end point when such interventions have not worked. The Bill makes vital changes to the trust special administration regime, established by the Labour party in 2009, to ensure that an administrator is able to look beyond the boundaries of the trust in administration to find a solution that delivers the best overall outcome for the local population.