Patient Safety

George Freeman Excerpts

Tuesday 24th June 2014 Commons Chamber

[Mr Speaker]

Order. For the benefit of the public—it is important that they find our proceedings intelligible—I should say that these exchanges are taking place because an urgent question was submitted and because I granted it. That is the beginning and the end of the matter.

[George Freeman (Mid Norfolk) (Con)]

After the shocking events at Mid Staffs under the last Government, I would like to congratulate the Secretary of State on his crusade for accountability and transparency as the best disinfectant, as shown by his support for whistleblowers and for 4,000 additional nurses. Does he agree that the collection, monitoring and day-to-day use of data on health outcomes is absolutely key? I welcome his Minister’s support for measures in my ten-minute rule Bill, now adopted and sponsored by me and my hon. Friend the Member for Stafford (Jeremy Lefroy).

[Mr Hunt]

I am happy to do that, and I would particularly like to congratulate my hon. Friend on the insight he has brought with regard to the power of data. In one example of why this is so important, the latest figures showed 43 or 44 people dying in the NHS because of medication errors, but if the person giving the medication had been able to see the patient’s entire prescription history, those horrific tragedies might have been avoided. That is why proper sharing of data is so important.

Oral Answers to Questions

George Freeman Excerpts

Tuesday 10th June 2014 Commons Chamber

[Dr Poulter]

The point is this: the funding system set up by the previous Government was based on historical funding and did not necessarily recognise the needs of patients. One practice might have been paid more for historical reasons than another practice next door that might have been treating more patients. That was unfair; we have changed it. NHS England is working at local level with practices that are, for whatever reason, in financial difficulties to make sure that it can help them get to the right place.

[George Freeman (Mid Norfolk) (Con)]

The GP practice in Watton in my constituency is struggling with the recruitment of GPs and is now two short, which is putting pressure on services. Today I heard of the proposal from NHS England to deregister 1,500 patients and transfer them to neighbouring practices in the constituency, raising a whole series of issues. Will the Minister agree to meet me to talk about what should happen, including whether NHS England could fund some sort of locum service?

[Dr Poulter]

Yes, I would be delighted to meet my hon. Friend. It is important to see, where possible, collaboration between GP practices on back-office services and other savings that could be made—something the public sector needs to do more generally so that more money can be invested in patients. The Government are training more GPs; in future, we will see 50% of postgraduate medical training taking place in general practice, leading to a big increase in the number of GPs.

Francis Report

George Freeman Excerpts

Wednesday 5th March 2014 Commons Chamber

[Mr Hunt]

Yes, it is. I will come on to that, but we are making good progress with the pilots.

[George Freeman (Mid Norfolk) (Con)]

Does the Secretary of State agree that it is important to remember that part of what allowed the Francis report was the release of data on outcomes, and that such data transparency is crucial to understanding where best and worst practice exists, which may not otherwise be picked up?

[Mr Hunt]

My hon. Friend is, as ever, absolutely right on this issue, which he has spoken about a great deal. The use of data allows inspections to be meaningful in a way that has not been possible before. We have to ensure that the public are happy that protections are in place on how their data are used, but at the same time we must be bold in using those data, because that saves a lot of lives.

The inquiry condemned the way in which complaints were handled in Mid Staffs. Following the excellent work carried out by the right hon. Member for Cynon Valley (Ann Clwyd) and Professor Tricia Hart, all hospitals will now have to demonstrate to inspectors that they treat complaints as more than just a process and are actively using them to learn and improve.

Doctors have responded to the new climate of transparency by agreeing to a world first: to make England the first country anywhere that publishes surgery outcomes by consultant for 10 major specialties. More specialties will follow.

--- Later in debate ---

[Andy Burnham]

I, as part of the previous Government, left the lowest waiting times in the history of the NHS, and A and E was performing much better at the end of the previous Government than it is now. Hospital A and Es have dropped right down, so we do not need to take lessons from the hon. Gentleman.

Let us return to the issue of England and Wales. The mantra or script of Government Members is almost to deny that there are problems in England. Last week, 16 major A and Es in England were below the Welsh average on waits in A and E. Some trusts are seriously struggling, such as in Leicester, in the constituency of my hon. Friend the Member for Leicester West (Liz Kendall), and Great Western Hospitals NHS Trust and North West London Hospitals NHS Trust, where one in four patients were waiting more than four hours.

Another trust below the Welsh average was Barking, Havering and Redbridge, which includes Queen’s hospital, Romford. May I recommend to the Secretary of State that instead of sitting there mumbling away, he read an article on The Guardian website today by Saleyha Ahsan, an A and E consultant who has worked at Queen’s hospital, Romford? She writes:

“Being a doctor in accident and emergency has at times resembled being a medic in a war zone.”

May I remind him that this is the English NHS she is talking about—the one he is supposed to be responsible for? She goes on to say that the severe shortage of A and E doctors is a result of his predecessor’s failure to listen to the warnings from the College of Emergency Medicine about the looming recruitment crisis, because it was obsessed by its reorganisation. Dr Clifford Mann said he felt like

“John the Baptist crying in the wilderness”

because the Government’s reorganisation brought “decision-making paralysis” to the NHS. What does Dr Mann say now? He says that even after the reorganisation these issues cannot be dealt with, because

“there are now a lot of semi-detached organisations to deal with”.

Government Members do not like hearing it, but the fact is that the reorganisation by the right hon. Member for South Cambridgeshire (Mr Lansley) damaged front-line care in the NHS. May I remind the Secretary of State that just 12% of people think standards in the NHS have got better under the coalition, while 47% think they have got worse? Rather than pointing the finger at Wales, the Government need to spend a bit more time sorting out the problems they have created in England.

As my hon. Friend the Member for Easington (Grahame M. Morris) says, an urgent area that needs to be addressed is mental health. Some 1,700 mental health care beds have been cut over the past two years because these Ministers have allowed the first real-terms cut in mental health spending for a decade. As a result, alarming stories are emerging of very vulnerable children and adults being held in inappropriate accommodation, such as police cells. According to Mind, many trusts are reporting more than 100% bed occupancy. One trust in London has had to turn office space into temporary wards with camp beds.

We are also hearing of children being sent hundreds of miles to find an available bed. In a constituency case, my hon. Friend the Member for Leicester West found that there was simply no bed available in the public or private sector anywhere in England on a day when a very vulnerable child needed support. A recent freedom of information request by Community Care found that in 2013-14 10 trusts sent children to young people’s units more than 150 miles away. The furthest distance was 275 miles, from Sussex to Bury. A 12-year-old girl from Hull was sent 130 miles away to a unit in Stafford. Her child and adolescent mental health services team were searching for a bed for two days, and were told that the Stafford bed was the only one available in the country.

[George Freeman]

On a point of order, Madam Deputy Speaker. I came to have a debate on the Francis report. The shadow Secretary of State is not mentioning the Francis report; he is launching a criticism of the Government’s record since the report, which has nothing to do with it.

[Madam Deputy Speaker (Dawn Primarolo)]

Frankly, that is my business and I do not require any help to decide what is in order. The shadow Secretary of State is remaining in order, as the Secretary of State remained in order. I think it is best that we continue with the Front-Bench opening speeches to make sure that we can get in all the Back Benchers who wish to speak in this important debate.

--- Later in debate ---

[Andy Burnham]

My hon. Friend has raised an important point. People are confused about the new NHS, and confused about who has responsibility for what. The Government have created more organisations, not fewer; the NHS is more top-down than it was before; and that is not changing the culture. Robert Francis himself has said that the culture is not changing. The Government are utterly complacent if they think that they have got everything sorted out.

[George Freeman]

Will the right hon. Gentleman give way?

[Andy Burnham]

Time is against us, I am afraid.

The Secretary of State is wrong if he thinks that top-down regulation is the only answer. It cannot prevent things from going wrong in the first place. The Secretary of State should accept all the recommendations of the Francis report, including the recommendations that are designed to change the culture at a local level.

Let me now turn to the future of Stafford hospital, and address the point made by the hon. Member for Stone (Mr Cash). If there was one thing that the people of Stafford deserved after what had been a long and painful process, it was the legitimate expectation that, at the end of that process, they would see a fully functioning local hospital that was both safe and sustainable. That is why I believe that the conclusion of the trust special administrator process is both wrong and unfair on them. It will result in a significant downgrade of the hospital, and there is still no clarity in regard to important services such as maternity.

The issue of the future of Stafford hospital goes to the heart of the handling of the inquiry and the decisions made about it. When I arrived at the Department of Health in June 2009, the official advice that I received was that I should not hold any further inquiry into what had gone wrong, because it would distract the hospital from the essential task of making immediate improvements. I could not accept that advice, because I believed that we needed to get to the full truth of what had gone wrong. That is why I appointed Robert Francis to conduct an independent inquiry. However, I stopped short of a full public inquiry because I had been warned that such an inquiry could destabilise the hospital and prevent it from making improvements. The Secretary of State nods.

That is the advice that I was given, but I told Robert Francis that he could come back to me and ask for powers to compel witnesses to appear before him if he felt that that was necessary. He came back to me to say that he felt that he had had all the co-operation that he needed. Indeed, he had had more, because of the nature of the inquiry that I had set up.

As the Secretary of State will recall, after the first Francis report I commissioned a second-stage inquiry into regulatory systems. I did not disagree with the coalition’s decision to upgrade it to a full public inquiry, as that was always a finely balanced judgment, but I did warn at the time that the hospital would need further support, given what a full public inquiry would entail. I do not believe that it has been given that support. Worse, the administration process that it has undergone has been brutal. I do not believe that there is a district general hospital in the land that could survive a three-year public inquiry followed by financial administration. The Labour party’s view—informed by the Lewisham and Stafford examples—is that the Government are misusing the administration powers created by the last Government to drive through reconfiguration on cost rather than clinical grounds, and we will therefore move to delete those powers from the Care Bill next week.

--- Later in debate ---

[Jeremy Lefroy (Stafford) (Con)]

I was told by a senior member of the medical profession that the two Francis inquiries were the most important look at the NHS for at least two decades. He was right. The first, which was commissioned by the previous Government, revealed what Robert Francis describes as the

“appalling suffering of many patients”

primarily caused by a serious failure on behalf of the trust board, which did not listen sufficiently to patients or staff and failed to tackle an insidious negative culture involving a tolerance of poor standards. The second report, from the public inquiry commissioned by my right hon. Friend the Member for South Cambridgeshire (Mr Lansley), described how

“a system which ought to have picked up and dealt with a deficiency of this scale failed in its primary duty to protect patients and maintain confidence in the healthcare system.”

It is a tribute to those who fought long and hard against the odds to have the inquiries and reports instituted by the last two Governments that their importance is recognised.

[George Freeman]

Does my hon. Friend agree that one of the most shameful episodes highlighted by the Francis report is the consistent and persistent neglect of the whistleblowers in the service who tried to raise the issues that were being hidden, and the systemic neglect of their interests? Many of them are still suffering, and this is still going on in Wales today. Will he invite the shadow Secretary of State to acknowledge that the problem is ongoing?

[Jeremy Lefroy]

I agree. The treatment of whistleblowers has been a disgrace, not just at Mid Staffs but in many other places. I have seen consultant contracts from way back that have prevented their raising issues even with their Members of Parliament, and I am glad to say that sort of thing is coming to an end. I want to try to focus as much as possible on the Francis report, however, as I believe there are many important lessons that all of us, including me, have to learn.

As the Health Committee has said, as a consequence of the issues I have outlined,

“a healthcare system established for public benefit and funded from public funds risks the undermining of its guarantees of safety and quality.”

It is my sincere hope that we never have the need for another inquiry of this nature. This should mark a watershed in the NHS—a time when patient safety and high-quality compassionate care is the rule, delivered through a positive and caring culture, underpinned by safety and quality management systems through our health service and backed by openness and accountability, which I am sure many Members will speak about later. It is thus that we can respect the memory of those who suffered at Stafford, but also in many other places across the UK, as the work of the right hon. Member for Cynon Valley (Ann Clwyd) has shown.

The Francis reports, and particularly the accounts of patients’ experiences, should be required reading for all medical and nursing students. I ask the Secretary of State to confirm that he will pursue that with Health Education England.

Robert Francis, for whom I have the greatest respect for the calm and understanding way in which he conducted the inquiry, made 290 recommendations, but I shall concentrate on his essential aims. He writes of fostering a common culture of putting the patient first. It is sad that he must write that, but it is necessary. However, before we rush to find fault with a service which has lost its way, let us just consider the society in which it operates, starting with ourselves. Can we honestly say that we always put our constituents’ interests first? What about others in the professional and business worlds? When self-interest and personal fulfilment are so often lauded, why is it that we expect the NHS to be so very different? Saying that is neither to excuse nor to lower the bar, but to understand how difficult it is in some circumstances to maintain that highest of standards. Ensuring that patients come first when dealing with several very ill and distressed folk, perhaps at 2 o’clock in the morning, takes more than just compassion. I am not downplaying compassion in any way—it is essential—but the underpinning of quality and safety systems carried through as second nature is also required. It means ensuring that the leadership is on call to provide extra help as soon as it is needed. It demands the strength to speak out for what is not acceptable and an openness to admit when there are problems. Without the systems and standards, the supportive leadership, the strength and the openness, not even an angel can always put patients first, much as they would wish to.

There has been much debate about staffing levels, and rightly so. Although the problems at Stafford went far beyond numbers, there is no doubt that cuts contributed to them. When I was first selected as parliamentary candidate in 2006, the trust had a £10 million deficit. It wanted to achieve foundation trust status and needed to balance its books, and part of its solution was to reduce the number of nurses. I should have questioned that, as should others, but we accepted the trust’s assurances that it would not harm patient care. I say to all right hon. and hon. Members that one thing that must come out of this report is that each of us must be emboldened to challenge our local trusts when they make statements such as, “This won’t harm patient care”, despite their cutting 100 or more nurses. The approach to staffing management and data publication used at Salford Royal NHS Foundation Trust has been held up as an example of good practice in staffing by the Health Committee and the Secretary of State, so let us act and adopt it everywhere.

I recall that when I was first elected to this House, I was shocked at the tone and content of some of the responses by the NHS to complaints. Not only did they take several months to arrive, but they were sometimes complacent, and they certainly lacked compassion and understanding. That has, for the most part, changed considerably for the better—it certainly has in Stafford. The overwhelming message I receive from my constituents who need to complain is that they are not interested in compensation, but they are interested in a better NHS for everybody. So let us approach the complaints system from their premise, not that of lawyers. That is the responsibility of the chief executive, who should review all complaints, and personally read and sign all response letters. The Secretary of State responds to several complaints each week personally and in this, as in many other ways, he sets the example.

Although I am encouraged by the progress made in treating complaints, I am less confident about accountability.

--- Later in debate ---

[Ann Clwyd]

I am grateful to Professor Sir Bruce Keogh for offering to assist. Given his vast experience, the people whom he offered to assist would be sensible to take the offer very seriously indeed.

The Transparency and Mortality Taskforce, which was set up by the Welsh Assembly a year ago, has today announced recommendations on a measure of mortality for Wales. Although I welcome its finally releasing the recommendations, I will await details on their implementation, which is unlikely to start until the autumn of this year. On mortality statistics, the taskforce provides an interesting academic discussion of the pros and cons of using mortality statistics as a measure of service quality and a means to compare hospitals and countries. Of course, none of that is new, but neither approach is impossible.

After almost a year, it is disappointing that a taskforce of 31 members has failed to arrive at the benchmarks on mortality that are urgently needed, so that fair international comparisons can be made between Wales, England and other countries. That was the taskforce’s job. The promise of a further statement in September 2014 appears to put the resolution of this matter even further away; one can only speculate on the reasons for that. Some good intentions may be expressed, but that is not enough, given the high level of public concern.

We continue to have only the published RAMI figures to go on. Six Welsh hospitals have RAMI figures of between 105 and 115, with 100 showing cause for concern, as we all know by now. A figure of more than 100 was described as a smoke signal. If the figure is way over 100, there is a big fire. It is not surprising that people are worried about what is actually going on. This is horribly similar to the murkiness that surrounded the mortality statistics for Mid Staffs.

We now know for certain, however, the position as reported by the Royal College of Surgeons after visiting the University hospital of Wales at Cardiff in April 2013 to investigate poor standards of care. It describes certain parts of the hospital as dangerous. It was worried about people dying on hospital waiting lists while waiting for heart surgery. Even those who got their surgery had deteriorated on the waiting lists. When they got their surgery, they were much more ill than they would have been.

Last week, the Royal College of Surgeons wrote to Healthcare Inspectorate Wales to ask what action has been taken about concerns raised last July in a report about patients dying while waiting for heart surgery. Following its initial report, the Royal College of Surgeons wrote to Healthcare Inspectorate Wales in August to claim that 152 patients had died in the past five years while waiting for heart surgery at the University hospital of Wales and Swansea’s Morriston hospital. I put on record my alarm about the lengthy delay in the promised revisit of the Royal College of Surgeons to those hospitals. It was promised in September, but it still has not taken place.

Other warnings to be heeded, said Francis, should come from complaints made by patients. Well, what do we know about this in Wales? Complaints trebled last year, according to the Welsh ombudsman, but the system for dealing with complaints, let alone learning from them, is highly unsatisfactory, so much so that an inquiry is under way after several high-profile cases. Obviously, we look forward to seeing the outcome of that, mindful that the retiring Welsh ombudsman said in November last year that accountability in NHS Wales has “broken down” and that there is a “lack of challenge” in the system. He asked:

“Where is the voice of the patient in the NHS in Wales?”

The fourth warning sign that Francis mentioned was signals from staff and whistleblowers. Many of them have reached me, too. Some people have told me that they are no longer able to do their jobs properly. I have had several phone calls from consultants who will not even give their names and who say that, if they gave their names, they would be sacked from their jobs.

More people are speaking out openly, and this week a letter appeared in the Western Mail from a consultant paediatrician, who said:

“The intervention of Sir Bruce Keogh, Medical Director of NHS England, expressing concern regarding high mortality rates in several Welsh Hospitals may not be welcome… It deserves to be taken seriously.

Mortality rates are ‘risk adjusted’, which means that the mortality rate is ‘adjusted’ for hospitals that deal with a disproportionate number of seriously ill patients, some of whom, sadly, but inevitably may not survive their treatment. It’s therefore appropriate to review clinical practice in all hospitals whose mortality rates are above 100. The recent publicity relating to high death rates at the University of Wales following liver surgery, where an independent Royal College of Surgeons’ report identified 10 deaths that were deemed ‘avoidable’ highlights the sluggish response of the hospital’s own management to information that should have been spotted far earlier.

A ‘Wales-wide’ investigation...or indeed a ‘health board-wide’ investigation would be too general, and would probably fail to identify clinical practice where there is a need for improvement.

Any review needs to be ‘department-wide’. All health boards have sufficient information available to them that allows identification of individual departments, possibly individual practitioners, where clinical outcome falls below the norm”—

the outliers.

[George Freeman]

The right hon. Lady is a doughty campaigner and commands the respect of the whole House for her work in bravely highlighting the issue. Does she agree from her experience and the correspondence that she has received that there is a lesson about the need for a different culture in the NHS of respecting the views of patients and whistleblowers, not treating them with contempt as though expressing such views is disloyal? Does she also agree that this saga highlights the importance of integrating data and having a statutory requirement to use the data to highlight the best and worst practices in the interests of patients?

NHS Patient Data

George Freeman Excerpts

Thursday 27th February 2014 Westminster Hall

[George Freeman (Mid Norfolk) (Con)]

It is a pleasure to serve under your chairmanship, Mr Bayley. I thank the Backbench Business Committee for supporting me in applying for this debate, and those hon. Members who have found the time, on a day when attendance here in Parliament is not compulsory, to join me in supporting this important agenda, which is incredibly timely given the recent debate and coverage in the media about concerns over care.data and the wider issues that it raises. I thank the Select Committee on Health for its hearing earlier this week and its support for this debate.

It is no exaggeration to say that the use of patient data is one of the most important subjects being debated in this Parliament, because the use of such data is central to numerous important quiet revolutions. The first is discovering and preventing another Mid Staffordshire NHS Trust, possibly the biggest institutional failure in public services in recent decades. It is also key to planning the health and care of an ageing society, the costs of which are one of the key drivers of the health budget element of the structural deficit that promises to hold this country in debt.

Data are key to evidence-based policy making and the modernisation of 21st-century NHS services to tackle the chronic gap in health productivity. They are key to tackling the growing medicines deficit, which is causing the NHS and the UK to fall ever lower in the league tables for access to new medicines. They are key to helping unlock the UK’s ability not just to tackle that but to turn it on its head by becoming a global hub of the new model of patient-centred drug discovery sweeping the globe. Finally, they are crucial to generating huge new revenues for the national health service and potentially massive savings in the drugs budget by making the UK the best place in the world to design the new generation of 21st-century targeted and personalised medicines, which are replacing the old one-size-fits-all model of drug design—the old big pharma blockbuster model—which is failing.

The Francis report highlighted a major crisis in the NHS and was a massive wake-up call for all of us. Let us remember that thousands of patients suffered unnecessarily as the result of a massive systemic failure of health care delivery that was deliberately and shockingly ignored by health professionals, who ignored whistleblowers. It was not identified by any management data at the time, because although we were recording it, we were not using it. The use of outcomes data to measure outcomes and performance is utterly core to the successful delivery of modern services across our society. The biggest crisis in this debate is not our over-exploitation of NHS data but our shameful failure to allow transparent performance management in the NHS and care sectors earlier.

As we have seen these last few weeks, issues involving the use of patient data can arouse a storm of controversy and highly charged emotional and partisan debate, including a hugely visceral set of conspiracy fears based on the idea of big government allowing their friends in big business to exploit our data for narrow commercial interests and the incompetence of Governments to manage data securely. This debate is fuelled by and, at worst, worsening a profound collapse of trust generally in Government and big business, which is becoming something of a defining zeitgeist of our times. Pro and anti campaigners have come out in force to proclaim the merits of their relative positions.

[Sir Peter Bottomley (Worthing West) (Con)]

Although it was not directly about data, the last time this happened was during the scandalous media coverage of the measles, mumps and rubella vaccine scares. It took 12 years or so to find out eventually that the arguments against the vaccine had been absolutely bogus from the beginning. I say to my hon. Friend, because I may not be able to make a speech, that some of the campaigning organisations, including SumOfUs and 38 Degrees, have stirred up trouble when they should have been backing responsible use of NHS data for the benefit of all of us.

[George Freeman]

My hon. Friend makes a powerful point. I will acknowledge later the veracity of some of the points raised, but he is right that some irresponsible fears have been raised, which do nothing but damage public health. The MMR debacle is a good example of why we need to use those data and why we need very high rates of opt-in so that they can be used in that way.

Unsurprisingly, due to that debacle, many now ask whether there is a future for this quiet revolution in the use of patient data to deliver the benefits outlined above. After all the controversy and public backlash, where can the hope of a data-led NHS go? Is public trust now so low that the Arab spring of health outcomes and transparency is over? I suggest that it is not, and that the Government and NHS England’s decision to delay the care.data initiative in order to give more time for a wider public discourse provides a platform for rebuilding public trust and confidence. I will make some specific suggestions for the Government to consider that I think would go a long way towards achieving that.

I will begin by sketching out the revolution that I believe is currently under way in 21st-century medicine and how data are central to driving it. I will then show how the ten-minute rule Bill that I have introduced on patient rights over patient data, and the Patients4Data campaign that I helped to found, some of whose members are here in the gallery, are articulating the benefits of patient data. I will then summarise and address the understandable concerns of many patient data opponents, which have been aired in the past few weeks. We must carry public trust and confidence; how can we put measures in place to combat those concerns? Finally, I will set out how I believe the scheme can be saved and how we can ensure that patient data can be used to deliver the benefits that we all want in a way that carries public trust.

Fundamentally, I suggest, this debate on data is a small but important test for our politics. Will we let some of the greatest advances in modern medicine and the chance of a truly 21st-century model of health care elude us and get lost in a muddled partisan debate that generates more heat than light, or let failures of health care delivery like those in Mid Staffordshire be compounded by failures of parliamentary and political process? Or will we rise above it to recognise the reasonable objections raised by opponents, address them with the studied calm that an issue of this importance demands and find a workable solution on a truly cross-party basis?

I hope that this debate will play a part in helping us take the latter course and show this House at its best, with politicians coming together to find answers in the interests of the British people, patients and the NHS, as well as the care professionals who rely on us to get it right. As they have a duty of care to the patients of this country, so we as elected representatives have a duty of care to the democratic process and to them as citizens. The transformational impact of data is too important to get lost in a debate dominated by petty factionalism and party rivalry. This serious issue demands serious answers, which this debate will help to provide.

I mentioned a quiet revolution in modern medicine. I suggest that slowly but surely, 21st-century health is changing from something done to us by government when government has thought that we needed it to something that modern citizens do for ourselves. It is a revolution ultimately driven by data in three profound ways—a quiet revolution in transparency of outcomes across the NHS; in research and how medicines are developed; and in empowerment of patients to take more responsibility for their own health care.

On transparency, we saw—most traumatically in the Francis report, although it is working across other areas of health care—that our constituents increasingly want to understand and see that their patient journey through the health system and, crucially, the care system is properly tracked. To share a personal example, I have power of attorney for my elderly mother, who was hospitalised last summer. When she came out of hospital, as thousands of our constituents do every day, she was suffering and in pain, and not getting the care that she needed. I wanted to be able to log on quickly to see what her diagnosis was, what she had been prescribed by way of pain relief and which of the mountain of expensive multicoloured pills she had been prescribed over the previous weeks and months she should have been taking that afternoon. I wanted to be able to ask the right questions of the system and the people in it when she was unable to do so for herself. Why could she not simply have given me her login password so that I, with power of attorney, could log on with her NHS number to her care record and see at a glance live information on her condition?

I have given a small example, but it is one that the younger generation in particular now expect in the delivery of public services. They want and expect data and easy online access to drive accountability. The genie is somewhat out of the bottle in terms of public interest in the power of data and online access to drive both transparency of outcomes and patient empowerment. The frightening truth is that we are currently in a dark age in some areas of our health service. The Government have sought to tackle that through the care.data initiative, and we should welcome that. The issue is how we tackle that in a way that commands public trust and confidence.

Despite all the technological advances of the last century, we are still unable to say how many people receive chemotherapy in the NHS each year, or how many prescriptions are issued. For all we know, there could be another Harold Shipman—God forbid—operating in a GP practice somewhere in Britain; or, more likely, a GP surgery or social care unit that is operating well below acceptable standards. We—the patients, taxpayers and citizens of this country—have a right to know, and to expect that MPs are asking the right questions and using our position in Government and privileged access to that vast data set to ensure that we are asking those questions and demanding the answers.

The horror stories from Mid Staffs were brought to light only by the power of outcomes data. Patients were dying unnecessarily. People were drinking water from flower vases. We now know that whistleblowers were ignored. It was only through the power of data that the scandal was uncovered. After all, data do not lie. If, as the Secretary of State said, sunlight is the best disinfectant, open data provide the light we need to stop the sort of abuses that were going on in places such as Mid Staffs and Winterbourne View.

The second and perhaps most groundbreaking application of data is in research. The truth is that the traditional model of medicines development on which we and the NHS have relied for almost 50 years, in which the pharmaceutical industry goes away for us and spends hundreds of millions—increasingly, billions—and comes back with a perfect drug claiming to suit everyone, is a model that neither we nor the NHS can afford any longer.

Having had a career in biomedical research, my experience is that over the past 10 to 15 years this country has quietly come to lead in the appliance of patient data sets in particular disease areas to drive and accelerate the development of modern medicines. That has had extraordinary benefits for NHS patients. I declare an interest in that I spent the last seven years of my career in biomedical science and research helping to create partnerships in the NHS between NHS clinician scientists, research charities, industry and university scientists, in order to try to accelerate the process by which modern medicines are discovered and developed.

The truth is that the more we learn about genetics, genomics, patients and disease, the more we know that someone else’s disease will probably be different from mine. Our susceptibility to it will be different, as will our response to different drugs. The revolution in research data offers an extraordinary opportunity for the NHS to be the place in the world where we develop and design 21st-century medicines targeted at the patients who need them, and generate extraordinary opportunities for NHS patients and clinicians. Instead of being a country that can no longer afford a spiralling drug bill and that, through inevitable rationing, becomes an ever less attractive place to develop and launch new drugs—accelerating our crisis in access to medicines—we could become the best territory in the world in which to do patient-centred drug design, and thus get the fastest access to the latest medicines. That would be a huge prize for our country.

I shall give an example that brings that opportunity to life. The last project that I worked on before coming to Parliament was at King’s college here in London, with Professor Simon Lovestone, the head of research at the college’s academic health science centre and the professor of psychiatry. The project was funded by the NHS National Institute for Health Research and looked at the catchment population of the South London and Maudsley NHS mental health trust—250,000 patients suffering from a range of mental health ailments. Members will be aware that there is no magic bullet drug in mental health; there is a huge cocktail of some very difficult drugs, with often hugely traumatic experiences and side effects for patients. It is an unsatisfactory area of modern health care in which we are still failing a large number of patients, despite the best efforts of those seeking to care for them.

The system that was put in place, funded by the NIHR, created an anonymised data set of the 250,000 patients, which allows researchers to look across that cohort at relationships between medicines and outcomes and between disease diagnosis and MRI scans. It shines a light on which drugs are working for which patients and starts to allow us to improve treatments, target the right drugs to the right patients, and begin to understand the complex interplay of genetic, lifestyle and pharmaceutical factors shaping disease, as well as giving possible opportunities for breakthroughs in diagnosis and treatment.

Interestingly, in the context of the anonymisation debate, crucial to the success of the NIHR-funded system is the ability to trace and analyse GPs’ notes in a long sequence of diagnoses for an individual patient, and to understand the interaction of a number of different factors in that patient’s life in predicting particular patterns of predisposition and response to drugs. In discussing anonymity, pseudo-anonymisation and total anonymisation, we must therefore be careful to ensure that we support a system that allows the right people to use the right data in the right way in order to drive health benefits.

We must also distinguish the use of data for research from the publication of data. We have discovered from the story this week in The Daily Telegraph about a secondary analysis of data by insurance companies that those data were originally published by a think-tank. We must therefore be careful to put in place an appropriate system so that, for core research within the NHS, the necessary freedoms to look at individual patient and non-anonymised data are protected, but we have a cascade of protections leading out so that published data are absolutely safeguarded against de-anonymisation.

[Damian Hinds (East Hampshire) (Con)]

I congratulate my hon. Friend very warmly on securing such a timely and important debate. The protections that he is talking about are fundamental to a lot of people with strong views on this issue. By what mechanism does he envisage data sets becoming available? Who would be in charge of the protection? Do we make large data sets available? Would there be some sort of automated system to find breaks in the data? My question, essentially, is: what are the mechanisms to reassure people?

--- Later in debate ---

[George Freeman]

My hon. Friend has put his finger on it. I will come in due course to some detailed ideas, but his question merits an “in principle” response. It was proposed in the initial version of care.data to use one or two advisory boards within NHS England. Their memberships are not particularly accountable or transparent, and nor are their criteria, although they are no doubt staffed by laudable and well-meaning public professionals. My hon. Friend’s question shines a light on the issue—what is the basis on which different sorts of data are being released, for what purpose and to whom?

Later on I will suggest that we ought to be putting such advisory bodies and the framework for data release on a statutory footing, with protections to help to secure public trust and confidence. We must also ensure that Parliament can look—annually, biannually, or whatever might be appropriate—at ensuring for itself, and for the benefit of our constituents, that the system is working as intended. My hon. Friend’s key point is that if we are to maintain public trust and confidence in a system based on opt-out—that is essential for the data set to be maintained at the level of scale and competence required for its function—we must earn the right to win over public support for opt-out. If we do not put in place the right protections, we will not earn that right, and we will risk large numbers of patients opting out. If that happens, we would have been better off putting in place protections that we would have preferred not to be necessary, but were, in order to secure public confidence.

To return to the system in the South London and Maudsley NHS mental health trust that was established by Simon Lovestone, it creates extraordinary opportunities for us here in London—and Britain more generally—to lead in the field of developing treatments for a whole range of mental health ailments, from Alzheimer’s to a range of other psychiatric conditions that cause so much pain and suffering. They also cause vast secondary costs to our health economy.

The third and most important reason this quiet revolution of NHS data is so important is in what I call empowerment. If health care is to move from being something that government do to us to something that we increasingly, as modern health care citizens, take responsibility for, we need to be empowered to engage in that health care economy. We need to be enabled to take more responsibility for our own health, our own health outcomes and our own predispositions to disease, and enabled to embrace an active role as health citizens able to use the system to drive the search for new treatments and cures; and we need to be given the tools to play a more active role in shaping our own health care destinies.

Twentieth-century medicine has essentially been passive: we wait until we get a condition and then we get what we are given. I believe 21st-century health care will be all about empowering a new generation of health care citizens to be proactive, taking an active interest and role in preventing disease, and helping to engage as patients in research and in treatment as patient support networks. The revolution in social media and the internet is already playing a profound role in allowing that to happen, making Britain the home of some extraordinary work that is being driven by our medical research charities in bringing patients together to support research, and also to support treatment, care and networks. It is connecting British patients, particularly in the field of rare diseases, with global networks and communities of patients.

We are seeing extraordinary things happening with patient groups raising money; philanthropic funding; companies being formed; and joint venture vehicles being formed by patient groups wanting to go and find the cure to their disease, often going back to interrogate old data from yesterday’s drugs, or failed drugs, to discover whether they might have worked for particular patient catchments and cohorts. That revolution is all to the good. It is something that we need to be encouraging and building into the system.

Ask any clinician and they will tell you the same thing. It is very striking that when patients first get a serious diagnosis, they quickly become overnight advocates of the power of the internet, online support and patient data, and the ability to plug into research, online information and patient networks. It can be very challenging, particularly when patients are hungry for information, to stumble into and across the wrong source—unhelpful sources of information—and GPs often find themselves having to correct their patients and put them back on track, but I do not think that that is a reason to say that the revolution is wrong or bad. It is a reason to make sure that we make it easier for patients to plug into the right sources of information.

When we talk to patients, the sources that they naturally trust are the NHS, the National Institute for Health Research—the NHS’s own research base—and the great charities whose philanthropic and disease commitment is unquestioned. We ought to be thinking about creating a framework for patients to access online to make it easier for our patients to plug into those trusted sources of information.

I spoke recently to Cancer Research UK, which is in the process of developing a patient portal. It will sit on the Cancer Research UK website as a portal to help cancer patients access clinical trials. It will recruit through the trials, through the Cancer Research UK charity. It also has a major technology transfer arm and is developing and supporting the development of new medicines—in many cases, medicines on which the industry simply does not see enough of a return to develop, because they are often targeting quite rare and specialist cancers. This is the revolution of medicines discovery that we need to be encouraging, and it is utterly based on patients engaging and supporting each other, and driving philanthropic and joint venture and mixed models of medicines, discovery and development. All that is down to data. Without those data, we are powerless to see neglect in our health care system; to help to save lives through research; or to gain further control of our own health care through this revolution of empowerment.

Fundamentally, we need to remember that we are talking about an evolutionary process. This quiet revolution did not start last month with the care.data leaflet job. The Health and Social Care Information Centre is not a sudden change sprung upon the public. We have been collecting health data in this country for more than 25 years. The UK and the NHS have been slowly leading the world in this field, but, for a range of reasons, we have not yet told the public the story. No wonder they are confused.

We started collecting basic health data 25 years ago. Most recently, out-patient data were added in 2003. A and E data were added in 2008. Crucially, the previous Government did not feel it was necessary to give anybody the chance to opt out. That is a decision that was taken, I am sure, in good faith at the time. I think it is a sign of how public attitudes are changing that the Government announcing they are giving people the right to opt out has triggered a massive backlash and public debate about on what basis there is any assumption that there is an automatic opt-in. It is a sign of how public attitudes are changing and that public trust in Government to always act in the best interests of its citizens is lower than it was.

[Sir Peter Bottomley]

We must pay tribute to the media in helping us on all this. They are not always helpful. When Dr Foster information on hospital experiences is aggregated and published, everyone is pleased because they can see what is good, what is better and what should be stopped, but when it starts spreading to GPs, people suddenly start thinking it is all a frightful shock. It took the BBC, I fear to say, six days to wake up to the benefits and the common currency of the use of anonymised medical data for the benefit of us all.

[George Freeman]

My hon. Friend again makes a very important point. Such debates are difficult. Whenever science and complex science are being debated, there is a danger that the easy, controversial and headline-grabbing arguments will dominate. I will not throw stones from Parliament and bemoan the lack of qualified scientists in the media. The truth is that we have a lack of well-informed science dialogue in our public discourse. There are excellent journalists in the debate. They do us a favour by understanding and promoting sensible and high-quality public debate, but my hon. Friend is absolutely right that we have seen—he has mentioned MMR—cases in which well-intended public policy has been distorted by a badly handled media debate. That is true across different parts of the biosciences.

In agriculture, we have seen similar debates around GM. The proper debate about the benefits is not had because the level of public discourse does not allow us even to acknowledge what they are—we stay at an emotional level. Somehow, Parliament needs to find the ability to have those conversations. We are extraordinarily well equipped in this country compared with Europe. We are the only country that has a chief scientific officer in every Department, and that has a cabinet of chief scientists that meet weekly to advise the Government as a whole as well as their individual Ministers. Only three other nations in Europe have a system of chief scientific officers. Britain has an opportunity to lead as we grapple with a lot of higher science and technology in the 21st century.

The HSCIC in its new form will allow better use of information to join up care, but it comes as part of an evolution of health care data, not a revolution launched with care.data this year. It is no good having a £3.8 billion integration fund for better provision of services unless we have the right information, and unless we can join up intelligence to understand what really good care looks like. The truth is that this is part of a much bigger picture, with medicine and health care being transformed by an explosion of new technologies around the world. I contend we are living through a biomedical revolution every bit as profound as the agricultural and industrial revolutions that came before. Extraordinary new diagnostics, devices and drugs are being developed that will transform health care.

I want to share one example, which I recently came across in hosting the “Silicon Valley comes to the UK” med-tech event in Cambridge before Christmas. Interestingly, I met a Brit based in California who, after a successful first career in Hollywood special effects, decided that he wanted to put something back and do something rather more meaningful. As a child, he was obsessed—that was his word—by the “Star Wars” movies. He ended up developing a helmet that reads the neurological signals in the brain and, using algorithms and software, converts those into basic speech.

Having developed the first prototype, he trialled it on a cerebral palsy patient, a young man with an acute palsy who was unable to communicate. His mother had, like mothers do when children are diagnosed or suffer in that way, spent 21 years caring for her son. When they put the helmet on, to establish some communication protocols, he said to the mother, “I am now going to ask a series of simple questions that you will know the answer to and I want to establish whether your son is hearing and answering me correctly.” He proceeded to ask yes/no questions, including, “Do you like coffee?” and “Do you like tea?” The answers, translated by the algorithm, came up on the screen, “Yes” and “No”. He asked the boy’s mother, “Are these answers correct?” She said, “They are 100% correct.” He then asked, after a long pause, “Do you love your mother?” What came up on the screen was, “Yes. Yes. Yes. Yes.” After 21 years of not having any communication from her son with cerebral palsy, for the first time she heard that her son loved her. That was achieved by the most extraordinary combination of algorithmic, diagnostic and Hollywood-derived technologies.

In health care, we are seeing an extraordinary convergence of technologies across different fields, which are genuinely transforming what will be possible in the 21st century. Data and information sit right at the heart of it. We have a duty to try to tell the public what could be possible if we allowed this revolution to be unlocked.

The UK is pioneering a new model of patient-centred biomedical research. Across the world, the life science industry is radically reconstituting itself around what everybody is coming to recognise as the most important asset of all in modern biomedicine: the ability to work with clinicians and their patients, with biopsies, and with patient records and data, to design a new generation of targeted and personalised medicines, diagnostics and devices. That model of targeted medicine unlocks the biggest prize of all: a new model of reimbursement, where, instead of our officials sitting in smoke-filled rooms every five years to negotiate prices for one-size-fits-all blockbuster drugs with the pharmaceutical industry, which neither we nor they, increasingly, can afford, we get to be the country getting drugs at reduced prices, reflecting the value we have delivered through our NHS infrastructure. That is why the Prime Minister’s leadership in grasping this opportunity, through the life science strategy, matters so much, building on the legacy—I should pay tribute to it—of the previous Government. Long-term thinking and cross-party unity of purpose is essential if we are going to unlock that value for the UK.

Of particular note are the launch in 2011 of the life science strategy, the catalyst fund, the patent box, the NHS open data initiatives, the “Innovation, Health And Wealth” reforms, and now the £100 million Genomics England project, in which the UK is making a bold leap into leading the world in genomics medicine, and for the first time sequencing the genome of 100,000 NHS patients and combining that at scale with its phenotypic hospital outcome data. With that, we will have not just partial bits of genetic information, but the entire genome. That will allow us to be the first place in the world that starts to identify certain things, saying, for example, “Interestingly, 98% of patients who don’t respond to that drug have this tiny genetic variation that we never spotted before.” That holds the promise of opening up a whole new world of medical research based here in the UK.

Ultimately, linking clinical and genomic data and using the power of modern computing provides the opportunity to turn the NHS from a major driver of our structural deficit into a major driver of growth in life sciences and a catalyst for public service innovation, reform, and patient and citizen empowerment. This agenda really matters.

The most inspiring examples of this tectonic shift in health care are, of course, the stories of the individuals whose lives have been saved by this data revolution. They include a man called Graham Hampson Silk, whose life was saved by the revolution in research-based medicine. Ten years ago, he was given three years to live. Yes, Members heard me correctly: Graham was supposed to die seven years ago. His life has been saved by the team of clinicians and NHS staff at Birmingham Royal infirmary and the Institute of Translational Medicine, led by the inspiring Professor Charlie Craddock. He found a drug in development in the USA and he personally led a fund-raising effort on behalf of his patient, highlighting again the way in which philanthropy and charitable work, embedded in our NHS as part of a mixed economy working with industry, is increasingly vital to the development of new medicines. Charlie raised the money through local fundraising to fund a trial for Graham and is now pioneering personalised cancer treatment here in the NHS, with NHS patients and their data, so that every patient in that unit becomes a research patient, helping prevent the next generation from suffering unnecessarily.

It was because Graham’s story and many thousands like it that I agreed to co-found with him the Patients4Data campaign this year, to highlight the life-saving effects of patient data. Patients4Data exists to make the case for how the medical revolution can and will transform, and is transforming, our lives. Our contention is that, if we do not embrace this data revolution, there is a clear and present risk of the UK—far from leading in this world of personalised medicine and winning in the global race for investment; and far from the NHS pioneering new models of health care, productivity and patient empowerment—becoming a backwater, talking the talk but not walking the walk.

Specifically on data, in a few years’ time it will be unimaginable to think of health records and patient monitoring as it is today, with paper records, cardboard boxes, partial digitisation, fragmentation across hospitals and community care a black hole. How many patients—our constituents—realise that what data integration there is in our health service currently depends on the humble treasury tag, that little green piece of string with two bits of metal at either end that holds together different cards and pieces of paper, particularly in our hospital system? On those treasury tags rely our 21st century system of medicine. It simply is not good enough.

That will be as unimaginable in health care as it was in the world of banking before electronic and telephone banking empowered millions of banking consumers to take more responsibility for their finances. I am old enough to remember when the first online bank was launched. I remember being worried that I could not really trust them with my money; worrying that the number on the screen might not actually resemble the amount of money in my bank account; and worrying that my money would leak and be lost, along with my financial data. I need not have worried, because that revolution in online banking has transformed banking and personal finance and has driven an extraordinary revolution in the UK in personal financial services. It has driven huge benefits for customers and citizens, with huge savings and a huge new market in online financial services. It is now taken for granted. The same revolution is happening and will happen in health care.

The Patients4Data movement and the Patient Data Bill, in respect of patient rights, which we have sponsored, have already secured extraordinary support from a wide range of key opinion leaders in this field: those who have seen what is coming and want the UK to be at the forefront, leading the charge. Those opinion leaders include more than 75 medical research charities, leading professor clinicians on the front line of UK research medicine, the NHS national director for patients and information and the Ethical Medicines Industry Group, which is not big pharma but small, emerging companies that are pioneering the new treatments and diagnostics that are all too often locked out by our current system of NHS innovation rationing.

Patient data are part of a wider story that will transform how we think about health and save hundreds of thousands of lives along the way. As with any revolution, there are new concerns, which I will now address. As the past few weeks have shown, many people have legitimate worries about the use and integration of GP and hospital data. Who has access to those data? Might your drink problem, sexually transmitted disease or confidential discussions with your GP be revealed? I am not talking about you, Mr Bayley, but about a hypothetical constituent. Will there be a free-for-all for insurance companies or others that want to use the data for malign rather than benign purposes? Major objections have been raised by a number of organisations. medConfidential has raised problems with the opt-out, and public ignorance of the scheme, the leaflet campaign and the communications. On the opt-out, medConfidential says:

“Where patients have objected to the flow of their personal confidential data from the general practice record, the HSCIC will receive clinical data without any identifiers attached (i.e. anonymised data)…This is not what any reasonable person would understand by opt out—if you opt out, no information from your medical record should leave your GP practice.”

A number of other concerns have been raised that merit attention.

Big Brother Watch has set out a number of concerns on the levels of public information, data extraction, the governance framework and sanctions, which merit consideration. On public information, Big Brother Watch flags the failure to ensure that the public are properly informed before any data are uploaded. It also highlights the conflation of various issues on the uses of data within care.data, from drug research to commissioning, monitoring of performance and treatment success. On data extraction, Big Brother Watch flags the lack of clarity on which data would be extracted for those who do or do not opt out, and the framework for the governance of that extraction. There are concerns about the ability of NHS England to establish a proper governance framework that commands public confidence. Big Brother Watch also raises the issue of appropriate sanctions for data protection infringements. The British Medical Association and the Royal College of General Practitioners have raised a number of concerns about communications.

I do not believe that those concerns equally merit Government attention, but some of them definitely do. I am interested to hear the Minister’s thoughts on how those issues will be addressed in the next six months. The major complaints are these: why cannot we have an easier opt-out? Everyone who understands the issue wants to see very low opt-out rates, but the price we pay for ensuring low opt-out rates is introducing a series of protections that cement public support for being opted in, as it were, unless they actively opt out.

There is a major concern about the governance, the lack of a code of practice, the lack of clarity on the basis on which the advisory councils work, the criteria that the advisory councils are using and what will constitute inappropriate release or use of data. There is also concern on the statutory basis of the advisory councils. Given how strongly we now know the public feel about that, should we not be thinking about ensuring that we put those advisory councils on a proper footing, so that they are accountable in some way to the people whom they are there to serve through Parliament?

Questions have been raised about the possibility of releasing not the raw data but a cleaned summary format, which is not straightforward. As I have highlighted, there are some areas in which the raw data are essential for the purposes of research but would not be appropriate for any wider publication. Some have asked whether we could have more transparency on the different fields of data. The truth is that the summary care data contain a patient’s name, postcode, blood group and date of birth—the basic data—down through their detailed diagnosis and treatment history. Different levels of sensitivity and confidentiality are inherent in that cascade before we even consider genomic data. A number of people have raised interesting issues on whether we should have different levels of consent and different stages of release for those different fields.

A number of people have asked whether we could have more transparency on the data being used, by whom and for what purpose. There are questions about the sanctions for inappropriate release and use of data. A number of people have pointed out that the current fines represent small change to big industry, and we need to ensure that we have appropriate sanctions that are an effective deterrent. What deters big industry will probably need to be different from what deters academics or a medical research charity of limited means from making a mistake.

There are interesting questions on appropriate parliamentary governance and oversight and on how we in Parliament, with a duty of care to our constituents, will be able to monitor the system. Even those who support my Bill and campaign have raised concerns that they want me to raise today. My hon. Friend the Member for Cambridge (Dr Huppert) has flagged reservations about the ability for people not to share their data if they wish. He particularly flagged the danger of patient-doctor confidentiality being breached and undermined by the release of data and the risk that patients would no longer want to talk to their doctor for fear that that confidentiality may be compromised. Other Members have raised questions about the scrutiny of the process, public awareness and the ability to unwind the process so that the Government can retrieve the situation if it is shown that data security cannot be assured. The Select Committee on Health has raised concerns, too.

Unless those issues are directly addressed, there is a huge danger that we will not win public trust and that we will lose the benefits of patient data altogether. To avoid that, we need to show how the revolution benefits us as patients and is designed in the interests of patients above all else. We need an opt-out system, but we have to earn public trust to allow it; we cannot just take that trust for granted.

We need to put the system within a framework of patient rights. Patients should have a framework and an architecture to access the data for themselves. We should encourage patients to take responsibility for their outcomes, their health and their data. If we do that, we will find much more public support for this important initiative. First, we should be clear about some of the basic facts relating to some of the debate in the past few months. For example, despite newspaper reports of the old story of data being released to an insurance company, which happened years ago, under the Government’s proposals it will be illegal to make data available for any type of marketing or the administration of any type of insurance.

We need to make it very clear that the experience of other European nations shows the importance of having an opt-out system. In Austria, which has an opt-out system, the consent rate is 99.98%. In Germany, which has a similar culture, economy and demographic situation to Austria’s but has an opt-in system, the consent rate is currently running at 12%. That has profound consequences for Germany’s public health planning and ability to unlock all the benefits that I described earlier.

To make the scheme worth while, the evidence shows that opting out is the only viable system. Low opt-in rates render the data patchy and partial, and they would hugely undermine the ability to spot the next Harold Shipman or Mid Staffs. Do we really want our constituents to be operating in a health system excluded from comprehensive outcome transparency? I do not want my constituents to be subject to that, but many of the objections listed above are valid. To address those problems, we need to set out clear measures to regain public trust in the power of patient data to save lives.

We must put the patient first and highlight the security of their data, because the data are theirs. The current mess is not sustainable, and we need a way to rebuild public confidence. How do we do that? I will conclude by saying that there is a clear way to address that question. I want to suggest five simple things that we could do to turn the current uncertainty into a genuine success, taking patients with us and addressing the concerns expressed. Some are contained in my Bill; others will require additional legislation.

First, we should establish a new charter of patient rights, as set out in my Bill, with the principles that the data are patients’ data and that there is a duty of care from NHS England, the Government and social care providers to patients. I well appreciate that it is difficult and something of a cul-de-sac to enshrine a legal definition of ownership in legislation, but a series of rights, responsibilities and obligations flow from the principle of it being patient data, and we should enshrine that in statute.

The charter of patient rights would enshrine what rights patients have and put the conversation on data back to where it should be. It should not be about which mandarin in Whitehall has access to patient data, but how patients can access their data and use them to discover and drive a new world of health care. My Bill sets out measures to make the data available, using the NHS number as a unique identifier, abolishing charges and letting patients access their data quickly.

Secondly, we need to enshrine a new duty of care on NHS and social care providers to collect data properly, using the NHS number to ensure that we foster a culture of open data and transparency across the health system. My Bill sets out why that should be a contractual obligation, created through a new clause in the contracts of GPs and clinicians. There should also be a new duty of responsibility on NHS and care institutions to ensure that they are properly collecting and recording data in a way that patients and GPs can access through an integrated pathway record.

Thirdly, we must put the data release advisory bodies on a proper statutory footing so that the public can have confidence that those bodies have proper oversight and governance arrangements. We must set out more clearly the different protections for different fields of data. There is a big difference between the use of summary care data and the use of genetic or detailed diagnosis data, and we need to acknowledge and consider different levels of consent.

Technology is changing what is possible. Sophisticated automated online consent systems are being developed—by great British software companies, as it happens. Those systems could help provide patients with that subtlety of consent framework. That concern is inherent in some of the concerns expressed in the past few weeks. Others have asked whether the Secretary of State should be required appropriately to sign off on different levels of data, but equally one does not want him to spend too much of his time signing off on individual data release. We need a framework that the public can have real trust in.

Fourthly, we need to think about having some sort of annual parliamentary reporting on the use of the data and a review of the outcomes and insights that the data are generating.

Finally, we need a tougher statutory framework, with real criminal sanctions for data breaches. That would reassure the public. Campaigners are right to suggest that fines are of little real deterrence to some. To give the public ultimate reassurance about the safety of their data, we must look again at the punishments that can be handed out for data breaches. There is simply no way we can ever win the argument on protecting the public’s data unless there are clear penalties.

The six-month delay in the roll-out of care.data is a valuable opportunity to address a number of widespread concerns. Ultimately, we must assure the public that their data will be used only to save lives and improve our collective health. Rather than focus on who has access to data, we should focus on how the data are used, and we can do that through a combination of those five new steps.

Most of all, I call for the Minister to take this opportunity to set up a proper formal working party of interested parties to address these issues, to show how fears can be addressed and to report back on a workable solution that could command the confidence of those concerned. We need to do that now. If we enact some of the described measures, and possibly others, and set up such a working group, we can use that six-month delay to get into a position where, when the care.data is relaunched in October, we have not just dealt with some of the concerns, but built a profound sense of public, patient and GP support for the process and the benefits that will flow from the use of these data. While there are always risks to any endeavour, the debate does not, as it has in the past few weeks, have to be characterised by a stale and overly polarised insistence on security on the one hand and data use on the other.

We have to explore the issues, break them down and tackle them. There is no security for the patient unable to live another 20 years because the data system is incomplete. In short, this is a make or break moment for the NHS and for public health in the UK. Will we embrace the new world of 21st-century health care, or do we want to let those advances be lost in the muddle of fear and reassurances that the public do not trust? We need to take robust action now to deal with the criticisms at hand. By doing so, we can make use of the truly world-leading reservoirs of data that the NHS has, for the benefit of us all.

While the economic argument is compelling, there is much more to the issue than projections about structural deficits and the cost of ageing. It is about one simple question: who wants to be better for longer? With the right safeguards in place, I know that there is only one real answer to that question, which is that we all want to be better for longer and we want to live in a society that is using every means at its disposal through the uniquely valuable institution of the NHS to make that moral, social, political and economic crusade a reality.

In conclusion, this debate and process can be a moment—not just here today at 2.26 pm, but this year—for our politics to demonstrate itself at its best. It can be a coming together of interests, with Parliament and politicians listening to the debate, taking the best arguments and working together in a non-partisan way to deliver a long-term benefit for the nation. The Francis report demonstrated the tragedies of the past and the dangers of an overly polarised debate. The future can be different. It is up to all of us in the House to try and make it so.

--- Later in debate ---

[George Freeman]

Thank you, Mr Amess, for the opportunity to wrap up. I thank all the hon. Members who have spoken this afternoon. I thank Opposition Members for their spirit of cross-party support and the Minister for her generous remarks and the encouraging things she said about the Government’s commitment to the process of consultation and to the Patients4Data campaign. I also thank her for what she has just told the House about the Bill and some of the measures set out. I look forward to working with her and officials to try to make a success of that and to supporting her and the Department in that work. Thank you also, Mr Amess, for your and your colleague’s chairmanship this afternoon.

Question put and agreed to.

Medical Records (Confidentiality)

George Freeman Excerpts

Tuesday 11th February 2014 Westminster Hall

[George Freeman (Mid Norfolk) (Con)]

I congratulate the hon. Member for Leeds East (Mr Mudie) on raising this issue for a debate that I think merits a bigger attendance. I hope that the subject will be debated subsequently on the Floor of the House.

This is an important issue. We have seen in recent months and years in the House that data sit at the heart of so much of the transparency revolution that is taking place in health care, not least in the Francis report, which was indeed in part driven by a revolution in transparency, with outcomes data revealing differences in outcomes across the UK. That has highlighted that, within our precious and beloved NHS, there is huge variability in standards and outputs. The genie is out of the bottle, in terms of the public interest in the power of those data to drive both transparency on outcomes and patient empowerment—a theme that the hon. Gentleman rightly touched on.

I declare an interest in that I come to this matter after a 15-year career in biomedical science and research, in the last seven years of which I helped to create partnerships in the national health service between NHS clinician scientists, research charities, industry and university scientists to try to accelerate the process by which modern medicines are discovered and developed. My experience is that, over the past 10 years, this country has quietly come to lead in the appliance and use of anonymised cohort datasets and, indeed, specific patient datasets in particular disease areas to drive and accelerate the development of modern medicines, with extraordinary benefits for patients in the NHS.

The truth is that the traditional model of medicines development, on which we and the NHS have relied for nearly 50 years, in which the pharmaceutical industry goes away and spends hundreds of millions—or increasingly, billions—of pounds and comes back to us with a perfect drug that suits everybody, is a model that it cannot afford, and we cannot either. The more we learn about genetics and genomics, and patients and disease, the more we know that your disease, Mr Hollobone, will be different from mine: our susceptibility to it will be different, as will be our response to drugs. The revolution in research data offers an extraordinary opportunity for the NHS to be the place in the world where we develop and design 21st century medicines targeted at the patients who need them and generate extraordinary opportunities for our NHS patients and clinicians.

I want to mention an example that brings this matter to life. The last project that I worked on was here in London, at King’s college, with Professor Simon Lovestone, the head of research at King’s academic health science centre and professor of psychiatry. The project was funded by the National Institute for Health Research, an NHS body, and looked at the catchment population for the South London and Maudsley NHS mental health trust—250,000 patients suffering from a range of mental health ailments. As Members will be aware, in mental health, there is no magic bullet drug; there is a huge cocktail of some very difficult drugs, with hugely traumatic experiences for patients, who often have to change dosage. It is an unsatisfactory area of modern health care, in which we are really failing a large number of patients. The system that was put in place, funded by the NIHR, created an anonymised dataset of the 250,000 patients, which allows researchers to look across that cohort at relationships between medicines and outcomes, disease and MRI scans, and really shines a light on which drugs are working for which patients. That gives extraordinary opportunities to us here in London and in Britain to lead in the field of developing treatments for a whole range of mental health ailments, from Alzheimer’s to a range of other indicators.

The truth is that these data are utterly key to the quiet revolution in 21st century health care and medicine that we are beginning to see for three reasons. The first is research, as we have discussed. The second is accountability, as we saw in the Francis report most traumatically, but across the board. My constituents want to understand and to see that their patient journey from care is properly tracked. I have power of attorney for my mother, and last summer I wanted to be able to log on quickly to see what she had been prescribed and what her diagnosis was when she was unable to do that for herself. The younger generation particularly want and are beginning to expect to be able to use data to drive accountability.

The third and most important reason is empowerment, which the hon. Member for Leeds East touched on. We are moving from an age when health care and medicine was something that was done to us by the Government to something that we want modern 21st century citizens to take more responsibility for. Several concerns have been touched on, some of which are valid and important to discuss.

[Mr David Davis]

My hon. Friend is making a fabulously compelling case and I think that I agree with everything that he says except for one presumption: this is being advanced with one, all-singing, all-dancing database, instead of a set of tailored, directed ones.

[George Freeman]

My right hon. Friend makes an excellent point, as ever, and I was just coming to it.

The hon. Member for Leeds East raised several important points that I want to touch on. We should be clear that the data will be anonymised, and it might be worth looking at a framework to ensure that only anonymised data are released. No one is even beginning to think or talk about insurance or anything to do with insurance companies. That has not been mentioned, and it is important to say that here. That is not what the issue is about. We should all remember that it is illegal for pharma companies to contact any patient even if they have got hold of data.

On opting in and opting out, the evidence suggests that patients want their data to be used in research. The opt-in rate to the biobank project is 98%, and when patients are told that the data are not being used for research, they want to know what on earth is being done with them.

An additional point worth making concerns doctor-patient confidentiality. There are layers of data, and my right hon. Friend’s broken nose would sit quite high. More discreet information such as notes by a GP may not be appropriate for release, and we should acknowledge that we are talking about layers of data.

I will wrap up by saying that there is a huge danger in the Government’s laudable initiative to link their datasets together to drive the revolution: a clear statement of patient rights is needed. Patient data are involved, and patients should have a framework and the architecture to access them for themselves. We should encourage them to take responsibility for their outcomes, their health and their data. If we did that, I think that we would find much more public support for this important initiative, which I welcome.

--- Later in debate ---

[Dr Poulter]

In the time available, it is difficult to speak about detailed points. I apologise to my hon. Friend for that and I will write to him addressing some of the points that he raises. However, I can assure him that robust safeguards are already in place to protect patients with mental illness, and those safeguards will remain robust, if not more so under the systems that we will put in place.

It is important to recognise that the big challenge facing the health and care system is the fact that in the past we have had too much silo working, which has been to the detriment of patient care. The health system has often operated in a fragmented and siloed way. The operation of the health and care systems is not integrated and joined up. Key to driving improvements in patient care is ensuring that we join up the information that informs what good care looks like. Integration involves ensuring that a process exists to join up health and care information to improve care for patients.

We want to look after people with diabetes, dementia and long-term illnesses and to give them dignity of care in their own homes. It is important to do that and to have the right information and evidence to do so. We are well into that journey. The £3.8 billion integration fund will help with the provision of services, and the health and social care information centre will help us to get the right evidence base to drive properly joined-up, integrated care.

[George Freeman]

Will the Minister confirm that the situation at the moment—that is, under the previous Care.Data initiative—is more or less that GPs have patients’ records, many of which are not electronic but in paper format with treasury tags, but there is no formal link across to hospital records? Hospitals can say whether a patient has been admitted, but most of them do not have an integrated system to know what treatment a patient received in different parts of the hospital. Normally, someone pushes a wagon along the corridor with the treasury-tagged information. Also, there is no integration at the moment with the care system. The data of many of my constituents who go in and out of hospital for acute care and community care are chaotic. That makes transparency difficult, and it was one of the things at the heart of the Francis report and some of the Winterbourne View issues. We must remember that we would all gain from this public health benefit.

[Dr Poulter]

My hon. Friend makes an excellent point, and he is right to highlight the fact that we are talking about an evolutionary process. The health and social care information centre is not a sudden revolution. It will allow better use of information to join up care in exactly the way that he describes. It is no good having a £3.8 billion integration fund for better provision of services unless we have the right information and can join up intelligence to understand what good care looks like.

NHS

George Freeman Excerpts

Wednesday 5th February 2014 Commons Chamber

[Andy Burnham]

Yes, there has always been pressure on the ambulance service at this time of year, but if the Minister wants me to join in with his complacency, I am afraid I will not. The past 12 months have been the worst in A and E in a decade, and there are reports of ambulances across the country held in queues. Is the Minister satisfied with the performance of the ambulance service in his region of east England? Was he satisfied with the way the case I mentioned was handled? I do not believe he was or that his complacency at the Dispatch Box will be appreciated by his constituents.

[George Freeman (Mid Norfolk) (Con)]

As a Norfolk MP I assure the right hon. Gentleman that we are on the case regarding ambulances, and the Minister is leading the charge. I am interested in the facts. Is not the truth that we are treating 2,000 more patients every day in under four hours in A and E, and that we have 350 more A and E consultants? In Norfolk and Norwich hospital, people tell us that it was under Labour, with the IT issues, integration, GP contracts and working time directive that A and E became chaotic. The right hon. Gentleman’s attack is unfair, ill-judged and overly partisan.

[Andy Burnham]

I acknowledged that there is always pressure in A and E, but the fact is that it performed better in every month when I was Health Secretary than it has under the current Health Secretary. The hon. Gentleman mentions Norfolk again. We have been looking at the Minister’s website, which makes us wonder whether he considers himself a Minister or an observer of events in the NHS. Under the headline “Norman Lamb’s North Norfolk Ambulance Survey” he states:

“I have been campaigning over the last year to improve unacceptable ambulance response times in rural Norfolk.”

My God, this is the Minister! He is campaigning against his own Government.

Oral Answers to Questions

George Freeman Excerpts

Tuesday 14th January 2014 Commons Chamber

[Dr Poulter]

We have, of course, constantly assessed it. I hope the hon. Lady is not criticising the principle of improving and joining up care through better passing of data between services, which obviously has to be a very good thing. Let me reassure her that making available patient-identifiable information to third parties without the patient’s consent or on some other legal basis would be illegal. Information is held securely.

[George Freeman (Mid Norfolk) (Con)]

I congratulate Ministers on the reforms to open data and transparency, which have been a powerful catalyst for accountability and improvement in the health service—in particular, the care.data reforms. The Minister will be aware of my ten-minute rule Bill on the subject. Will he give us some assurance on the steps that the Department is taking to ensure the integration of data between the care and the NHS sector?

[Dr Poulter]

I can reassure my hon. Friend that the absolute heart of what we are doing on joining up data is ensuring that we join up data better and promote integration. Some of that will come from the £3.8 billion we are providing for more joined-up and integrated care between health and social care as part of our integrated care fund, or better care fund as it is now termed.

Oral Answers to Questions

George Freeman Excerpts

Tuesday 26th November 2013 Commons Chamber

[Norman Lamb]

It seems as if Labour is always desperately in search of a crisis, even if there is none to be found. If the hon. Gentleman had listened to the answer that I gave to the hon. Member for West Lancashire (Rosie Cooper), he would have heard me say that there had been a 38% improvement in waiting times for ambulance handovers between last November and this November. I am sure that he will welcome that.

[George Freeman (Mid Norfolk) (Con)]

I congratulate the Minister and the Government on the work that is being done to integrate social and NHS care. Does my hon. Friend agree that, for the many elderly patients moving between hospital care and community social care, integrated patient records across the two areas will significantly improve elderly care? Will he meet me and campaigners following Health questions to discuss my ten-minute rule Bill?

[Mr Speaker]

The link is a strained and tenuous one, but carry on.

Genetic Medicine

George Freeman Excerpts

Thursday 13th June 2013 Commons Chamber

[George Freeman (Mid Norfolk) (Con)]

Thank you, Mr Deputy Speaker, for your patience—and that of the House—in waiting for me to raise this important subject at this time of the week. I also thank the Minister for her presence. I pay tribute to her long interest in this subject, her work at the Department of Health on cancer, screening and public health—she is a tolerant and fair-minded advocate of public health in the Members’ Tea Room—and her interest in the difficulties of the early onset of dementia. I was struck the other day by her moment at the Dispatch Box, when she was greeted with extraordinary affection in the House, which was a sign of the great respect and affection in which she is held and the respect for the work she does.

My interest in this debate comes from a family interest in cancer—an interest that I know is shared by many in the House and across the country. Few families have been untouched by the disease, which is increasingly understood to be a genetic disease. I lost my father and my mother-in-law to cancer, and, as the parent of two children, take a close interest in something that I might have inadvertently passed on to them. I also have an interest because I come to this House after a 15-year career in biomedical research and speak in my role as Government adviser on life sciences, taking a deep interest in how current breakthroughs are changing the assumptions on which we base public policy.

For the purposes of giving some background and declaring an interest, I want to explain what I did in those 15 years. I spent four years running a predictive toxicology business, which looked at drug compounds and analysed their likely toxicology and efficacy in different patient groups. I also spent six years in translational medicine, working with academic health science centres up and down England and Scotland, helping to set up the Scottish translational medicine research institute and working at University college London on the cardiovascular institute and at King’s Health Partners on dementia. I was delighted two years ago to be given the chance to support the Government as life sciences adviser. I stress that I have no ongoing commercial interest in the sector. For the purpose of clarity, I draw the House’s attention to my entry in the Register of Members’ Financial Interests. It details historical investments, including a very small shareholding in GlaxoSmithKline, which has been passed down through our family since my grandfather met the founder and decided that the then baby milk business might have a good future.

[Geoffrey Clifton-Brown (The Cotswolds) (Con)]

Foresight!

[George Freeman]

Indeed. The register also shows a very small shareholding in a women’s cancer diagnostics joint venture business that I helped to set up with Cancer Research UK and UCL Partners.

This is a topical debate. We have seen in the newspapers recently the news of Angelina Jolie’s decision to have a double mastectomy, having received a diagnosis of a high chance of developing breast cancer based on the most well-known and acknowledged genetic test, the BRCA mutation. The widespread coverage in the press of her decision has been helpful in raising public awareness, as have the powerful and moving descriptions of the thinking behind her decision and of her husband’s support for her.

Only yesterday in The Times we saw the news of the NHS cancer registration service launching a project to bring together all the available data on the 350,000 types of cancer across the 50-million-patient database in Britain. Over the past month, we have also seen the launch of Cancer Research UK’s contribution to the global alliance on sharing genomic and clinical data. Topically, there is also an ongoing battle in the American Supreme Court involving Myriad Genetics and the ownership of the BRCA gene.

I believe that the revolutions in translational medicine, in experimental medicine and in the personalisation of medicine are a huge force for good. They raise a number of important issues, some of which we might touch on in the debate. By way of illustration, I want to share with the House a couple of stories illustrating how I came to see that force for good in practice.

The first involves a project at King’s Health Partners in south London, led by Professor Simon Lovestone, who is a pioneer in clinical research into psychiatric disorders, particularly dementia. The project is funded by the National Institute for Health Research, and I congratulate the previous Government on putting in place that infrastructure, which we have developed and continued. Professor Lovestone and his team have developed a case register information system, which is a portal for data for the whole of the South London and Maudsley NHS mental health trust, involving 250,000 patients. It brings together all the information, anonymised and in large datasets, on medical records and clinical histories and on the often complex drug histories involved in treating mental health, along with MRI brain scans, to create a powerful database for the purpose of shedding light on the mechanisms of action and the clinical drivers of early-onset and late-onset examples of the disease.

The portal is now being used by researchers on campus for purely academic work, alongside researchers from industry who, quite fairly, pay substantial amounts of money to King’s Health Partners in order to use the facility. They often find themselves working alongside leading-edge researchers. As a result, King’s Health Partners has signed up to a number of collaborations with industry to work on some very expensive drug programmes. That is an example of how data can accelerate academic research and bring academic and industry researchers together in pursuit of a common cause.

The other company that I want to mention is the joint venture set up by UCL Partners called Abcodia. It is based around a database of 250,000 women who are at risk of gynaecological cancer. It was funded by Cancer Research UK and the Medical Research Council over 20 years, but at the end of the academic study, the database was sitting gathering dust. It is now being used as a powerful database to provide all sorts of screening and diagnostic molecular biomarker services, and is helping to identify the biomarkers that predict and are implicated in the onset of gynaecological cancer. It is also a powerful database for all the diseases of ageing in women, many of which are the same in men. It is a powerful tool for understanding the molecular biomarkers and the drivers for the early onset of a whole range of late-life diseases.

These databases are incredibly powerful, and across the NHS and across our university academic health science centres, they are being run under very high standards of ethical and regulatory regimes and with very strong patient consent. One lesson is that where clinician scientists work with patients to do basic and clinical research, patients and the research charities that work with them are hugely supportive of this revolution in genetics and computing.

More than 10 years ago we sequenced the human genome. It was a massive global collective effort, which took several decades and several hundred million pounds to achieve. It now costs about $1,000 to sequence the entire genome of one of us, and it takes no less than 24 hours—and those numbers are falling fast.

[Geoffrey Clifton-Brown]

My hon. Friend is to be congratulated on the widely respected work he is doing as a Government life sciences adviser; he really is doing a fantastic job. I congratulate him, too, on securing this debate. I think he is aware of the campaign of my constituent, Les Halpin, to accelerate the use of drugs in the NHS in carefully controlled circumstances on a trial basis for people with terminal illnesses. With the sort of conditions my hon. Friend has been talking about, if we could change the protocol in the medical profession and harness our innovative bio-sciences sector, we could become a world leader in the development of new drugs.

[George Freeman]

My hon. Friend makes an excellent point, and I pay tribute to his advocacy, on behalf of his constituent Les Halpin, of the access to medicines campaign. We have plans to continue to help support it. My hon. Friend’s point is important, and the point that Les Halpin has made is that people like himself with a terminal disease actively want the opportunity to take part in trials and research so that their disease and suffering will not be in vain. My hon. Friend speaks powerfully on behalf of his constituent and on behalf of those with other diseases who share that view.

The truth is that this revolution of translational personal lives medicine is all about the end of the one-size-fits-all blockbuster model of drug discovery and development. The more we know about disease, the more we discover the genetic predispositions of disease and how different patients respond in different ways both to drugs and to the onset of disease. We discover that what was yesterday one cancer is today three or four and tomorrow will be 30 or 40. This is breaking down the size of markets and requiring a whole new model of research around patients. It puts patients right at the heart of the research process. That is challenging for hospitals and for companies, but ultimately, I believe—we are seeing the evidence—it is good for patients, leading to quicker innovation and quicker access to drugs. It is also good for our life sciences sector. It is a win-win, which is why the Government were right to describe the report on the subject as “health, wealth and innovation”. The three do indeed go together.

I would like to take this opportunity to congratulate the Minister and the Department on the work they are doing in pursuit of the life sciences strategy, particularly on the £100 million cancer genomics project. That provides an extraordinary opportunity for Britain to sequence the genomes of 100,000 patients and combine that information with the clinical data—one of the world’s most precious resources in our NHS—creating a global hub that would put Britain right at the forefront of unlocking this field of cancer genomics.

I pay tribute, too, to the work of the research charities, which do extraordinary work driving funding and research, but also in advocating some of the changes that need to be made. In the time available, I will not be able fully to go through all the information I have received, but the Minister and I may be able to pick up some of the points afterwards.

I do want to say that Cancer Research UK has done a huge amount of work in this field, setting out a very clear analysis of what it wants to see happening—support for NHS provision of genetic tests for inherited cancer risk, improving existing molecular diagnostic services for cancer and strong support for the 100,000-patient cancer genome project.

The Prostate Cancer UK charity—you will remember, Mr Deputy Speaker, the moustache that I sported in the autumn in support of the Movember campaign—has highlighted the fact that nearly 35,000 men are diagnosed with prostate cancer every year and that 215,000 of us are living with the disease. By 2030, it will be the most common cancer in the UK. One in eight men will get prostate cancer at some point in their lives. The genetics of prostate cancer is well behind that relating to other diseases and needs to be accelerated as it is not as well understood. However, recent developments in understanding the genetics of prostate cancer have been crucial to driving up survival rates and showing the potential for future improvements in treatment.

Breast Cancer UK is investing substantial sums in the study of genetics, and the Breast Cancer Campaign has already provided £10 million. It has highlighted the role of Angelina Jolie’s recent decision in drawing public attention to the importance of genetics in providing earlier diagnosis and better treatment.

The Alzheimer’s Society has raised some interesting points. In many respects, Alzheimer’s is the toughest of the blockbuster diseases for us to crack, and it is becoming increasingly apparent that it is one of those diseases that we will not crack through the magic discovery of some drug. What is needed to beat this disease is a completely new model: a massive collective effort by patients and researchers using data and online tools such as PsychologyOnline. The Alzheimer’s Society has said that genetic testing may cause difficulties in some cases. A genetic defect cannot be repaired, effective treatment to slow the disease is not yet available, and the society fears that some premature genetic testing may trigger inappropriate responses.

Genetic Alliance UK has set out a detailed response to the debate, and has issued some important calls. In particular, it has called for the explicit inclusion of genetic testing in NHS England service specifications for all services that may utilise genetic testing. It has also called for investment in research that will help to elucidate the findings of whole genome sequencing and exome sequencing for clinical use, so that the benefits of the technology will be available to patients as soon as possible; for recognition of the importance of clinical genetic services as a resource for single-gene conditions; and for the linking of the commissioning of companion diagnostics with the stratified medicines for which they indicate patient response.

I have referred elsewhere to an Arab spring of health care. I believe that the current revolution—the stratification, targeting and, ultimately, personalisation of therapy, which cancer therapy is leading but in which other therapeutic areas are rapidly making progress—is all about patient empowerment. That applies both to someone like Les Halpin, who was mentioned by my hon. Friend the Member for The Cotswolds (Geoffrey Clifton-Brown)—someone who has a terminal disease, and wants to play his part in ensuring that others do not suffer in the same way—and to much younger patients with an easier diagnosis who want a chance to play their part in research. The aim is to give patients better access to information about their disease, and to earlier treatment. All the research findings show that patients on research programmes respond better, have better outcomes, and appreciate and enjoy—if that is the right word—the process.

There is also an Arab spring of disease charity involvement. Our disease charities are raising ever larger sums, and playing an ever bigger role. Movember, which was started five years ago by two Kiwis who raised $500, has now raised $23 million, and is the world’s biggest prostate cancer charity. It is using the internet and driving social media, establishing research committees, and setting standards for prostate cancer research all over the United Kingdom. The power of computing in genetics is transforming the way in which we conduct medical research.

Lord Saatchi’s Medical Innovation Bill, which is currently in another place but is coming our way, raises a number of the issues to which I have referred. It makes a powerful case for adapting regulations so that clinicians are no longer bound to stick to protocols that they do not believe will be effective. We need to make it easier for clinicians to innovate and to adopt new medicines and new treatments when they think there is a reasonable chance of a better outcome, without in any way undermining their duty to put patients’ interests first.

A number of other campaigns are coming our way. One of my reasons for initiating the debate was to give the Minister a chance to respond to some fairly specific policy questions. They cannot all be answered this evening, but let me present a few of them. Who owns the rights to genetic data, the rights to DNA—that issue has been highlighted by the Supreme Court’s ruling against Myriad Genetics—and the rights to clinical data? Some interesting work done in the other place suggests that, ultimately, we need to establish the idea that the data are ours. Your medical records are yours, Mr Deputy Speaker, and mine are mine. If we put patients at the heart of this, we will build a framework for consent and for enlightenment, which will be all to the good.

Who has the right to be tested, and when tested, what rights do they have to counselling? I want to reiterate that this has nothing to do with the insurance scare stories we sometimes read about in the press. I call again for the insurance moratorium to be extended. This is not about in any way wanting to undermine the ability of those who have had testing to receive health insurance. The point of this revolution is that it is about empowerment. It is about empowering patients actively to seek, and take, more responsibility for their health care earlier in their life, not penalising those who do that. There are also some important questions to be asked about how we open up the NHS to allow greater access to the types of medical breakthroughs that will fundamentally change the way we treat illness and disease in our society.

I am delighted to give the Minister some time to set out the Government’s support both for this important and emerging field and, as the Prime Minister said in his speech in December 2011 launching the life sciences strategy, for the inspiring vision that every patient in the NHS will be a research patient.

[The Parliamentary Under-Secretary of State for Health (Anna Soubry)]

I congratulate my hon. Friend the Member for Mid Norfolk (George Freeman) on securing this debate and pay a warm tribute to him for the great work he does as the Government’s life sciences adviser. I also thank him for his kind words about me. I pay tribute, too, to my hon. Friend the Member for The Cotswolds (Geoffrey Clifton-Brown), who yet again, quite properly, advances the campaign of his constituent, Mr Les Halpin. There is much merit in that campaign, and my hon. Friend has brought it to the Floor of the House before, and so he should. We wish Les Halpin all the very best, and I pay tribute to the great work he has done and the valid points he makes in his campaign. I should also congratulate all the charities my hon. Friend the Member for Mid Norfolk mentioned that are concerned with prostate and breast cancer and Alzheimer’s disease; I pay tribute to them for all the work they do on those diseases, and all the campaigning work they do in advancing this topic.

It is a good time to hold this debate, but I fear I will not have enough time to address the subject in as much detail as I would wish. Numerous questions have been asked, and the usual rules apply: if I do not answer any of them, I will, of course, write a letter—or, rather, my officials will write a letter—to my right hon. Friend. I just called my hon. Friend the Member for Mid Norfolk my right hon. Friend, and why not?

[George Freeman]

That is very kind.

[Anna Soubry]

Yes, it is very kind of me.

It is a good time to hold this debate, as the development of genomic technologies, based on the individual’s genetic data, is a rapidly developing field that will bring benefits for NHS patients and the economy. The UK is a recognised world leader in scientific research in genetics, and the services that are available to NHS patients are among the best, if not the best, in the world. The NHS, in its unique position as a single, national health care provider, is ideally placed to harness this new technology and reap the benefits.

The data that are obtained from sequencing part of, or the whole, genome are limited in their usefulness unless they are linked to more information on the individual and the results of their treatment. That is why controlled access to patient records will be vital in our efforts to improve diagnostic capability, understand better the epidemiology—I hope I do not struggle in pronouncing that word—of disease and develop better health care tools and treatments.

On generating more data, the issue of ensuring we protect data obtained from an individual’s DNA has been discussed in many different forums, including the 2009 Lords inquiry into genomic medicine in health care and the consequent work by the Human Genomics Strategy Group, which was led by the Department of Health.

In December last year, the Prime Minister announced that we would be the first country in the world to put in place a programme to sequence 100,000 whole genomes. That is part of a programme that will receive an extra £100 million in funding over the next three to five years. The result will be the building of safe platforms of data that will open access.

Now that it is becoming a reality, access to genetic data will continue to be a subject of keen interest to many. It is only right that it is debated on the Floor of this House because it is so important. As with other data, DNA sequence data will be governed by strict legal controls. It will not be shared with other parties in a form that identifies the individual unless there is a legal and appropriate basis for so doing, and where such a legal basis exists, the patient has the right to be informed about how their DNA sequence data are used. The sequencing information will be strictly controlled within existing NHS arrangements and managed in a way that protects patient confidentiality.

As I said, the raw read-out data are of little value to clinicians, researchers or indeed the industry if they cannot be linked to phenotype and clinical data, so we need to ensure that information-rich data sets are developed that have been value-added through linking genetic and genomic data to disease development, treatment and results. Data need to be made available in an environment that fully meets consent and data protection requirements. To ensure that we harness that potential as part of the growth agenda, which my hon. Friend mentioned, we must develop an industry ecosystem that helps to promote innovation within a healthy, competitive economic atmosphere, which respects data protection and consent boundaries and allows open data sharing for academic research.

While the protection of personal data is important, we should not forget that sharing data has immense benefits. Those patients with cancer or rare diseases who will have their whole genome tested as part of the Prime Minister’s initiative may well argue that they want more of their data to be shared, to help research into their condition and to help fellow sufferers. The recent review carried out by Dame Fiona Caldicott recognised that people’s concerns about what happens to their information, who has access to it and for what purposes, is hugely important; but people also raise concerns about why their data are not shared more frequently when common sense tells us all that it really should be. On the other hand, there was high level of anxiety among some clinicians about when it is safe to share information and what safeguards are required, including concerns about breaching data protection laws or threats to their professional status.

Clearly, a cultural change is required to rebalance sharing and protecting information in patients’ and service users’ interests. We believe that the Caldicott recommendations strike a good balance between the rights of the individual and the need to develop new treatments and services for the greater good. There is no contradiction between demanding rigorous safeguarding of personal information and enthusiasm about sharing information. We want to develop systems that provide open data from what we call safe platforms. There should be no surprises to patients or service users about who has access to their information, and they should be fully informed about their rights in relation to their data. That includes explaining to individuals how their information will be used, including de-identified information, and that it may be used for public health prevention and research, as well as providing assurance that any misuse will be tackled vigorously.

If we are to get better, less fragmented care and to harness the potential of genetic and genomic data for the benefit of all, any lack of trust between individuals, be they individual patients or organisations, in relation to their practice of information governance has to be overcome. The Department of Health research indicates clear public support for using health and care information in research to better inform and develop new treatments. We want to ensure that individuals retain consent to any use of their personal information. That is why we have asked the chief medical officer, Professor Dame Sally Davies, to retain oversight of the programme to sequence 100,000 whole genomes, to ensure that the patient and public interest is protected.

I pay tribute again to my hon. Friend the Member for Mid Norfolk. We could have a huge debate on this subject, and I apologise again that we do not have the time to take it further today, but as I said, I shall ensure that he has a response to all his questions. He has kindly provided me with many of them already, and my officials have compiled a long, long set of answers—far too long for this short speech. He will be in full possession of our responses, and I am sure that he will share them throughout the industry. I thank him again for all his hard work.

Question put and agreed to.

Oral Answers to Questions

George Freeman Excerpts

Tuesday 11th June 2013 Commons Chamber

[Mr Jeremy Hunt]

That is definitely worth looking at and is exactly the kind of proposal that we could think about for NHS England. It could make a very big difference.

[George Freeman (Mid Norfolk) (Con)]

Will my right hon. Friend clarify the position regarding NHS spending, in light of the recent comments from the shadow Health Secretary? My understanding is that spending increased from £99.7 billion in 2009-10 to £106 billion in 2012-13; an increase of £600 million, or 14,000 nurses or 6,000 doctors. Does not this show that the shadow Health Secretary’s reference to cuts is just irresponsible scaremongering?

[Mr Hunt]

My hon. Friend is right. There has been a £600 million real- terms increase in spending, something that the right hon. Member for Leigh (Andy Burnham) said was irresponsible. He will have to do a U-turn on this, and it will be an embarrassing one. He has talked about cuts in every single debate in the House and it turns out that those cuts never happened.