Care Bill [Lords]

Jamie Reed Excerpts

Tuesday 11th March 2014 Commons Chamber

[Dr Wollaston]

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 2 April of all the data released by the current body. I understand that that will set out the legal basis for those releases, but also their purpose, and that goes to the heart of my amendment.

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.

[Mr Jamie Reed (Copeland) (Lab)]

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?

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[Mr Jamie Reed]

It is a real pleasure to follow the hon. Member for Totnes (Dr Wollaston), my hon. Friend the Member for Worsley and Eccles South (Barbara Keeley), the hon. Member for Truro and Falmouth (Sarah Newton), the hon. Member for Strangford (Jim Shannon), who made a typically excellent speech, and the Chair of the Health Committee, the right hon. Member for Charnwood (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 the Member for Leigh (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.

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[Barbara Keeley]

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?

[Mr Reed]

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.

[Grahame M. Morris]

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.

[Mr Reed]

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 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, 30 January 2014; c. 516.]

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.

[Dr Poulter]

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.

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[Dr Poulter]

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.

[Mr Jamie Reed]

Does the Minister accept any responsibility for this near disastrous collapse of the care.data scheme, or is it all NHS England’s fault?

[Dr Poulter]

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 the Member for Totnes (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 the hon. Member for Worsley and Eccles South (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.

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[Mr Burns]

As always, my right hon. Friend anticipates what I am about to say and says it in a far more straightforward way. He is absolutely right to say that there will be exceptional circumstances; there has been one instance so far. In such circumstances, the health economy in a particular area will need to be looked at—not in isolation; that is impossible owing to the nature of patient flows and the delivery of care—in order to get to the bottom of the problem and solve it on the ground.

A number of hon. Members said that clause 119 was a vehicle for closing down hospitals or services while totally disregarding the wishes and needs of the local health economy and local people. I say to them with the greatest respect that they have—probably for genuine reasons—misunderstood the purpose of the TSA. I ask them to think again, because this is too important an issue to be politicised and used in a game of ping-pong between political parties, or groups within those parties, to try to score political points. Our sole aim must be to ensure the improvement and viability of services. Sometimes, tough decisions will have to be taken—because of changing patterns, or whatever—and in the overwhelming majority of cases, they will be taken through consultation and through the decision-making process in the local health economy.

We have been talking about the power of the TSA. I must point out, in the friendliest and gentlest way, that that power was not introduced into the health service by this Government. It was done, I think I am right in saying, by the right hon. Member for Leigh’s predecessor, and he did it for very good reasons. He accepted, as my right hon. Friend the Member for Charnwood (Mr Dorrell), the Chair of the Select Committee, said in his intervention, that there will be rare occasions when everything else has failed and this measure of last resort must be used. It is viable and reasonable to have that power as a measure of last resort, as the previous Government obviously thought; otherwise, they would never have put it on the statute book in their legislation.

[Mr Jamie Reed]

When this was tested in the High Court, the judge said that the Government were seeking to use the powers that the right hon. Gentleman has just described for a “strained and unnatural” purpose. Does he agree with that?

[Mr Burns]

The short answer to the hon. Gentleman, because I have the freedom of the Back Benches, is that I do not share that view. I was privy to the discussions that led to South London being put into special measures. That was done because there were real and significant problems to which it was impossible at a local level, within NHS London and elsewhere, to find a coherent—[Interruption.] The right hon. Member for Leigh says no. He was in opposition at the time these conversations were taking place.