[Hugh Bayley in the Chair] — Backbench business — NHS Patient Data
George Freeman (Mid Norfolk, Conservative)
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.
Peter Bottomley (Worthing West, Conservative)
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 (Mid Norfolk, Conservative)
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 TheDaily 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, Conservative)
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?
George Freeman (Mid Norfolk, Conservative)
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.
Peter Bottomley (Worthing West, Conservative)
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 (Mid Norfolk, Conservative)
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, to do that, 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 contains 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 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.
George Mudie (Leeds East, Labour)
It is a pleasure to serve under your distinguished chairmanship, Mr Bayley. I must compliment George Freeman. I have always regarded him as a talented man, but when a man can speak, take a telephone call, say who has rung him and switch the phone off without breaking a sentence, that is real ability.
I should almost apologise for daring to speak after the hon. Gentleman. I am at pains to say that I am not putting the opposite view to his. I had a debate last week. I only had half an hour to share with the Minister, but I gave up five of my valuable minutes to allow the hon. Gentleman to speak.
I do not see the debate as having two opposite sides; I see it as two different responsibilities or objectives that should be rolled into one objective. The hon. Gentleman spoke today for more than three quarters of an hour, and all but five minutes were on the medical side.
I said this last week—I will say it again—but I do not challenge the medical benefits of the exercise. I concede that medical improvements will flow from it. Those benefits are accepted and encouraged, but the other side is personal privacy in the important field of individuals’ medical records. There were indications, but I am not sure that the common ground was in the five points he made. We must search for common ground, but I will show the hon. Gentleman and the House why it is difficult to find.
This is not a dialogue; NHS England and the body with the long initials that was set up are not listening. They do not intend to listen or allow the public a real choice in the matter—that is the problem. If those bodies did as the hon. Gentleman said and saw the matter as, “If we are going to do this, we must gain the trust of the public”, we would all be in a better position. However, I do not see that as their objective, which has always been to get through the formal parliamentary Committee and medical-world structure. The less we know, the less interference from us and the fewer decisions we are allowed to take, the better, because the world will be better. Well, the world will be better medically, but the dangers that we are spelling out, in terms of putting every person’s full medical records on a database, worry us.
The dangers worry us in two ways. The first is the bringing together of the databases into one huge database, where all the information about an individual patient is stored. That is an important technological computer problem—a difficult problem that has to be argued out. The second worry, which I think is the greater, is also difficult. The exercise so far would not lead an objective member of the public to trust the authorities. The worry is about the flow of information out of that database to people outside the national health service or social care.
I have in my hand the document that has caused the fuss. It was sent out as junk mail, delivered on a Monday morning with all the other junk mail; the post office has a standard way of delivering it. A person gets their pile and looks for an individual letter—no. They know it is Monday, so the pile goes into the bin. That was how the document was delivered. Some 65% of the people who were polled, “Did you read it? Did you receive it?” said no.
Mr Bayley, you are a long-established politician. You know the number of times we deliver manifestos and leaflets to houses in an election. When we then go round, people say to us, “We never hear or get anything from you.” The public’s memory of what goes through the door is pretty short, but when things come in with junk mail, that is understandable.
The real objection, however, is inside the document, and we have heard about it today. The front page is the front page. The inside pages contain the lot, including “Introduction”; “What are the benefits of sharing my information?”; “Information will also help us to:”; and “What will we do with the information?”. It is all favourable. It is all on the medical side. That is not disputed, if we get the data together and look at complaints and how they are handled. I am a lad who is into computers and databases in politics. Databases transform information in ways one could never do with pen and paper. That is conceded and encouraged, but what about the other side—the disbenefits?
I challenge anyone to find from this piece of paper the down sides or things that we have to worry about that the bodies would like to discuss with us. They are not there. The document has two pages saying that the system is great and that it will do wonderful things, and then it has a section called, “What choice do I have?” Anyone getting a piece of paper like that would read two pages, be switched off before that, and say, “When we have to opt in, why would I want to opt out? This is wonderful.” Having listened to the hon. Member for Mid Norfolk, it is wonderful, so why would anyone want to opt out?
Let me discuss some matters of trust, because that is what the issue is all about. I have been in the House for 20 years, and I do not trust Governments. I would not tell people to trust Governments, whether Labour, Liberal or Conservative. I would say to people, “Put your trust in God if you wish, but don’t trust Governments”, because the state and Governments have a life and interest of their own. The document is an example of where something has been decided that might ruin the life of anyone sitting in the Chamber, especially those sitting on our Benches. We all know, as politicians, what happened to data that were secure beyond any reason—our expenses. How secure was that database? What damage it did! It killed people and imprisoned people, and it brought us down to below journalists, estate agents and perhaps lawyers in the esteem of the public. That was a “secure” database.
Is there such a thing as a secure database? That is one of the arguments, but I am still talking about trusting the Government. Do not trust the Government. Let me take the five things the hon. Member for Mid Norfolk said about what we should do. Four of them are about the Government and public bodies.
I serve on the Treasury Committee. We have gone through the banking world. Theoretically, everyone who matters to the financial world reports to the Treasury Committee. They appear for an hour—two, if pushed—before the Committee once a year, and they have been accountable to Parliament. I remember the lad who ran the Financial Services Authority coming before us. We were discussing, I think, the withdrawal of cheques. I said to him—I was in the Chair, I think—that the public were outraged by the proposal, especially the elderly. I said, “The Committee is outraged by it. We would like
you to go away and withdraw the threat to cheques. Will you do that?” “No”, he said. “I am the regulator. I do not answer to Parliament. I have statutory powers. You will have to convince me.” Those were his exact words.
Reporting to Parliament is a form of pompousness on our part. What on earth do they report to Parliament about? How do they do that? When do we see them? When do we question them?
We can look at the Annunciator monitors in the Chamber. I commend the ability of the hon. Member for Mid Norfolk to speak for nearly an hour; his speech on the subject was important enough. However, if you, Mr Bayley, were speaking in the debate that was on the Floor of the House while the hon. Gentleman was speaking, you would be talking about an important subject—the treatment of welfare beneficiaries—and you would have had six minutes. Six minutes—that is accountability to Parliament. That is the ability of the majority of parliamentarians to raise an issue. This debate is a rare event.
The hon. Gentleman talked about duty of care and a bill of rights for patients. Well, we have a duty of care in the health service. It was good, was it not? We have had it since ’48. But what happened at Mid Staffordshire? The duty of care was there. A document such as the one I was talking about matters little; the issue is about how the service is run and what happens on the ground in reality. All those patients were protected by the duty of care. All the people who died had that duty of care. It was supposed to be wonderful and supposed to protect them—but we would want a bit better protection now.
“We will make the data release body a statutory body” sounds fine, but who appoints to that statutory body? The Government appoint, one way or another. Who appoints to the committee or body that released the leaflet I was talking about? The Government. “Yes Minister” has not disappeared from our memories, so would we expect someone from York who works on the railways, for example, to be on that body or on any body appointed by this building? No. Would we expect to see a permanent secretary or an ex-permanent secretary on this great committee? “Yes Minister” would say we would.
Public sector pensions are not what they were, and we cannot have a permanent secretary retiring without having a side job given to him—and he will behave himself, or he will never get another one. Surprise, surprise, on the committee I am talking about, there are two: one from the Ministry of Defence and the other, the interim chief executive who is just leaving, from the Department of Health. Trust Government! An inquiry, a review, a statutory body or a quango—what is the first criterion for people being appointed? They behave themselves—that they are a safe pair of hands. That is the reality.
The only one of the five points made by the hon. Member for Mid Norfolk with which I totally agree is the last one, and I would push it a bit further. Misbehaviour on data of such sensitivity should not involve a fine. When the pharmaceutical or insurance industries are involved, or even the media, the penalty should be jail. The information in the file of people with a sensitive medical history could lose them their career, job, marriage, relationship or even life. That is what is in those files. That is why when we go and unburden ourselves to the doctor, we should be secure in the knowledge that what
is said in the doctor’s surgery stays in the doctor’s surgery. I am not opposing records coming out, but what about the basis on which people outside this building or the national health service will have access to and be able to identify those records? Trust—we are going to trust them.
What about the prevarication over opting out? How do we opt out? I have found out about this issue in greater detail over the past two months, but how do I opt out? I have not opted out yet, because there is more than one form to fill in when doing so. On Tuesday, the Secretary of State was asked whether opting out could be done online or by telephone. Apparently, we can do it on the telephone if we are able to get through to the doctors and get a person answering, rather than an answering machine, and we can go online if the doctor is online.
Yesterday, I met a nice gentleman sent from the organisation involved—it was a pleasure, and interesting, to meet him. I asked him about opting out. He said, “Opting out is a matter for the GP.” I had asked why there was not a full-page advert in the paper explaining the arguments in favour and the worries, saying to people, “Make a balance. It is your decision. It will affect you” and including some opt-out forms. “We cannot do that”, he answered. “The GP is the holder of the data, so GPs should do it.”
What is the situation on opt-out? It is the biggest argument and the biggest concern. If we listen carefully to the reasons for concern, the medical side do not want us to opt out. The more people who find out what could happen to their records, the more who will opt out. If the authorities were straightforward, such is the way of things that the number of people who opted out would be a small proportion of the population. Rather than trust to that, they have taken the decision to minimise opt-out in a most dreadful way.
We are told to phone and make an appointment with our doctor to discuss opting out, but we have little chance of doing that even if we have lung cancer. We do not have a chance. With a medical complaint, when we try to see our doctor, the surgery says, “Ah, well, we might be able to see you next week. Can you take a day off work?” What person will take a day off work to discuss opting out? That is absolutely nonsensical and not of the real world. They want us to say, “Forget about the opting out.”
Furthermore, before leaving that subject, if people opt out, they should not think that their details will not be in the database. They will be going into the database. The point of opting out is that any information going from the database to someone else, will have the personal information taken out—date of birth, postcode, gender and all sorts of things that can identify someone. We might opt out, but our records are still in the database.
Why should we trust the authorities? I am not as articulate as the hon. Member for Mid Norfolk, but I do not have to persuade people. As Nye Bevan said,
“Why look into the crystal ball when you can read the book?”
All the patient records of everyone in the Chamber who has had hospital treatment in the past 10 years were sold to a firm of actuaries, who passed the information
on to insurance companies. As a result, the insurance companies have 47 million records.
Of course we can trust Government—Government are great! We can trust the word of an individual who stands up to say, “The security is great.” Yes, we can, but that same institution then allowed all our hospital records to be passed—in fact, sold—to a firm of actuaries. Thanks to The Daily Telegraph, we know that that happened and that the information was analysed and put into a form that insurance companies could use to put up premiums for individuals and certain groups. As a result, we are paying higher premiums. That was our hospital records—“They are safe with us.” I might be getting a bit bitty, but I can pass the article to the Minister, if she wishes.
Another article was bigger—a whole front page—but I have not brought the one that I was going to speak about with me. I think it was yesterday, or the day before, in The Daily Telegraph, or The Guardian. It reported that a private firm had been in discussion with the body that is holding our records and building up the database, because it wants to buy the records, and it wants to buy them quickly. We have to ask about that individual company having discussions before the matter is even agreed, but the interesting point was at the end of the article. Not only was the company set up to deal with pharmaceutical firms—that is already straightforward—but the owner set up another company and stated that among the clients would be pharmaceutical companies. That is the word, “among”. We have to ask who the other customers are—the ones that have not been named. If the pharmaceutical companies are in there, the insurance companies will not be far behind.
In terms of trust, however, the worst thing is that spokesperson for the body in question has said that that company has been told that there will not now be any prior discussions and it must make an application in the normal way, with others, at a later date. What does that spell out—that “not now”? Two days after the balloon goes up, we go into the second period of re-examining the scheme and the matter is in all the papers, the spokesperson suddenly says, “We are not now going to have prior discussions with the firm.” I am sure the Minister will say what in fact the Secretary of State said on Tuesday in the House, namely that that sort of thing went on before, but things have been toughened up. Well, the Secretary of State has toughened things up so much that private discussions are going on with an organisation that we would all wonder about.
A further issue about trust is this: the records were going to be uploaded to the big database last autumn, but the process was stopped because some information about it came into the public arena, and the organisation took fright and said, “We will look at the situation for six months.” Those six months, which run out on
This Saturday the records would have started to be uploaded—indeed, there is a suggestion in some minutes from the HSCIC that maternity and children’s care records are already being uploaded. I will have to look at the exact wording of the board minutes, but that is
worrying. In three months’ time, all the records would have been in the database and the job would be done, but that was stopped because of the fuss, including in this place. However, the trust is gone. The process was stopped because the public had to be told more, but who in this room feels we have been told more?
Now, the process has been stopped again, and what has the body responsible said publicly? It has not done what the hon. Member for Mid Norfolk did in his speech, in which he gave us some information and set out some starting points for discussion and dialogue to help improve things and to bring people together—I am grateful to him for that. Instead, it has said consistently in all the press releases that it is delaying the scheme so that it can persuade the public how good it is. Perhaps it will send out the hon. Gentleman’s speech. That would do the job, because it was wonderful—I could not fault it, as he told us all the conditions that could be improved.
Members who are not present could put this case better than me. There are genuine worries. We represent people whose records are going into the database without them being aware of what is happening. Questions have been raised by both Government and Opposition Members, and what does the organisation responsible do? It cancels the process for another six months in order to improve a leaflet.
There was a little light earlier this week, with an article in The Times—it was only a short one, but every little bit of light is welcome—saying that the bodies responsible have broadened their approach: they are now aware that there are dangers in pulling all these data together and that the question of security has to be taken more seriously. If that has pushed producing another leaflet to one side, and they are working on that instead, I think the scheme is back on the table. Nobody wants to kill it. I have not met anyone who wants to kill it, or anyone who does not agree that the basis for the scheme is first class. All we want is for our voices to be heard. I represent 60,000-odd people, all of whom have medical records. How could I look one of those people in the eye and say, “I had the chance to stop your private details being attached to your medical records, but sold out?” We have to do something to ensure that security is as good as it can be. It is about trust.
“Has a risk assessment been carried out for the extraction service”—
that is, the extraction of GP records—
“and, if so, will he commit to publishing it and any recommendations made?”
Now that is a perfect question—educated, specific and designed to ease the worries of the general public. What answer did she get? It is parliamentary scrutiny at its best. Asked a specific question, the Minister said:
“We have, of course, constantly assessed it.”
He went on to say:
“I hope the hon. Lady is not criticising the principle of improving and joining up care”.—[Hansard, 14 January 2014; Vol. 573, c. 702-703.]
And there was more of that. Will the Minister tell us—I will be happy if, even with all the resources behind her, she has to answer in writing—whether a risk assessment has been carried out on the extraction service and, if so, will the Secretary of State publish it?
I will say, mischievously, that it does not really matter, because The Daily Telegraph has published extracts of the risk assessment—probably, hysterical extracts—so there is one, and it raises many questions. I do not say that in a hostile way. Thank God somebody who is not a hysterical parliamentarian or a computer whizz but is regarded as sensible has examined the scheme and said that there is a risk. All we wanted was for that to be acknowledged. We simply want a wee bit of movement, to get the maximum possible medical improvement with the minimum of risk to the security of the personal medical records of the general public.
I have a further point about trust—I see you looking at the clock, Mr Bayley, but it is such a pleasure to be serving under your chairmanship that I want to milk every moment. Even this week the Secretary of State was asked a question by Dr Wollaston, who is such a bright and straightforward colleague of the Minister’s in the Conservative party. She asked about those 47 million medical records that were sold to insurance companies, and she was talking about trust—
Hugh Bayley (NATO Parliamentary Assembly (President); York Central, Labour)
Order. I am not asking the hon. Gentleman to terminate his speech, but perhaps he would sit down just for a moment. I must vacate the Chair now, and my colleague will take over. We have had plenty of time for two speeches from both sides of the Chamber and they have ranged widely, but two more Members want to catch the Chair’s eye. The wind-ups will start a little before 4 o’clock, so I hope that the three Members concerned will keep an eye on the clock to ensure that everyone has a reasonable opportunity to express their views.
George Mudie (Leeds East, Labour)
I apologise, Mr Bayley, and I apologise to my colleagues. I understood that only one other Member was on the speaker’s list.
[Mr David Amessin the Chair]
The hon. Member for Totnes, a Conservative, said:
“Nothing will undermine this valuable project more than a belief that data will be sold to insurance companies, so will he”—
the Secretary of State—
“set out the way in which he will investigate how that sale was allowed to happen and categorically reassure the House that there will be no sale of care data to insurance companies?”
The Secretary of State’s reply was long, but I will give only the first sentence:
“My hon. Friend is absolutely right to raise that issue”.
What issue? She raised two.
“I am happy to give that assurance.”— [Hansard, 25 February 2014; Vol. 576, c. 147.]
What assurance was he giving?
May I ask the Minister what the Secretary of State intends to do—I do not need an answer now because the matter is in his head—and whether it will be something disgraceful? The BBC totally ignored the fact that 47 million patient records were sold outside the national health service. The Secretary of State’s colleague, the hon. Member for Totnes, asked him to conduct an investigation and give a specific answer.
The Secretary of State said there would be no sale of care data to insurance companies. That reassurance means nothing because the data will not be sold. There will be an appropriate charge to meet administrative costs. NHS England wanted to give it away for nothing, but the HSCIC said it would charge £1 for each data record to cover its costs. Will care data be moved to insurance companies directly or indirectly? Will the Secretary of State tell us in writing how he will ensure that such data do not land in the hands of insurance companies? He has given one of those assurances, and we will find out which one.
The refusal to acknowledge the security risk is at the heart of the issue. One objection is that all the data will be brought together in databases, whatever the hon. Member for Mid Norfolk says. He will remember that I asked how there could be a guarantee that they will not be breached. What is the answer? I will give the answer. They will be breached.
You may remember, Mr Amess, that a Glasgow man in his 20s breached the Pentagon’s database from his bedroom out of curiosity. The US Government wanted to extradite him to America but we fought against that. I asked the Under-Secretary of State for Health, the hon. Member for Central Suffolk and North Ipswich, whether he was telling the House that the patient database is more secure than that of the Pentagon? I did not receive an answer, so perhaps the Minister will tell me now, because the Pentagon would like to know.
Will the patient database be more secure than Barclays database, from which the financial records of 27,000 customers were stolen? The computer world says that there is a constant fight to keep databases safe from eastern European countries and there are even cyber attacks in China. But we are being asked to accept that the NHS database will be so secure that it will never be breached.
How do the Government expect to obtain trust if they do not accept that there are limits to security, and that steps should be taken to protect such sensitive data? It is fine for the medical profession to have access to the actual records, because that is what it is interested in, but it is not fine to be able identify individuals. How many people live in one postcode? It could cover a whole street, or a couple of streets. If the age, gender and date of birth were available, it would not be difficult to identify an individual. That is what we are facing, and we want the Government to do something about it.
An extremely worrying suggestion from a good source is that GP databases will be put into a huge centralised database. I have been reliably informed that those databases are not in the GPs’ offices. They do not have separate databases. I have been told that data are sent to three private companies to be stored. I would like some reassurance that that is not so, but if it is the House
should be told the basis on which those databases operate, what safeguards exist, and the criteria for the release of those data.
No one in the Chamber would trust the judgment of an organisation that entrusts so much sympathetic and sensitive data to Atos. It is probably deservedly one of the most despised public companies. The fact that it is French does not come into the picture. That does not matter. We laugh, but it is outrageous. It must have been mentioned in every sentence during the debate on welfare benefits. It received millions of pounds from the Government and, if I am charitable, over-extended its remit by putting people off disability benefit in enormous numbers and sometimes tragically. The Government have not sacked it; it decided to walk. However, the Government have now decided that it is such a good firm that the contract for uploading the patient database has been handed to Atos. It is unbelievable. If we are talking about trust, trust implies confidence and judgment—the people we trust must have that—so they have appointed Atos.
I simply say that trust is being lost daily. What we do in the next six months is important. As the hon. Member for Mid Norfolk did, I shall make some suggestions. There must be an urgent and transparent exercise to deal with concerns over security. There must be a streamlined, clear and convenient way to allow people to opt out and there must be massive steps to minimise identifiable data, or data being easily identified to an individual.
It is said that those conditions should be independently scrutinised—that is on the hon. Gentleman’s wish list—by some sort of board. To tie that in with what I said before, I would prefer somebody who has been writing these articles in Computerworld to be on that board. All the things that have happened—I accept that I have taken some time to spell them out—have happened, and trust has been lost. If we are saying that we will get a group of people together and try to bring together the two sides, one way to do it, as we normally do in politics and political life at a lower level, is to have some of the people who are criticising the thing on the board. That would give the public the greatest assurance that this is not a bunch of hand-picked people.
This matter is very important. I am sorry that I have taken so long, and that I am the man who has agreed to work for four days this week and all my colleagues are elsewhere, but there we are.
John Glen (Salisbury, Conservative)
I welcome the great opportunity to speak in this debate, Mr Amess—what a pleasure it is to serve under your chairmanship. I congratulate my hon. Friend George Freeman on his tireless campaigning, and on the full and sensible way in which he made his case.
Research is the most powerful weapon we have in the fight against disease. For decades, access to medical data has been integral to meaningful research—in the 1950s, it showed the link between smoking and lung cancer; in the 1960s, it proved that thalidomide was harmful to unborn children; and today, it helps our doctors identify the most effective treatments for cancer patients—but it is clearly time to move on from hastily scribbled GP records residing in dusty filing cabinets.
Patient data is becoming increasingly critical to ensuring the delivery of better treatments, and it can radically improve how long-term conditions are managed and understood in the NHS and the world of medicine.
Aligned to that, we have personalised care, which is, frankly, the future of medicine. Just a few years ago, cancer was treated by giving all patients very similar, or the same, surgery and damaging radiotherapy. As an example, I understand that Cancer Research is now using some 11,000 patient records to see how their cancers respond to particular treatments. The stratified medicine programme, as it is known, goes to the genetic core of a cancer to detect the mutations that cause it and identifies the specific drugs that can stop it.
Researchers can take on those fragmented pieces of data and collate them. By identifying broad patterns, they can start to understand the most effective treatment for specific cancers at the molecular level. That has undoubtedly developed our understanding significantly. We now know that one drug is more effective than standard treatment for one branch of lung cancer and less effective for another. Unlike the trial-and-error approach of the past, the success of care in the future will depend on researchers analysing a sample and then cross-referencing it with a reliable database to identify genetic markers. A targeted treatment can then be tailored.
It is not just cancer that presents opportunities for better data use. Long-term conditions present one of the most significant challenges for the NHS, but research enables us to identify the most successful medications to manage them. The King’s Fund estimates that we spend £77 billion every year treating long-term conditions. NHS spending on diabetes, for instance, is set to rise from £9.8 billion to £16.9 billion over the next 25 years. We would be spending 17% of our current NHS budget just to manage that. If we replicated those sums of money in lots of other areas of expenditure, it would clearly be unsustainable. That highlights that we must use research to identify the most effective treatments, so we can target resources at them.
A recent Cardiff university study looked at just 10% of GP records in this country. It compared two different treatments used for type 2 diabetes over the course of 12 years and found that one of them has a mortality rate that is 58% higher than the other. Patients naturally seek reassurance that they are being given the best course of treatment. Colleagues would acknowledge that constituents who come into our surgeries are very anxious when they believe that the treatment or drugs they have received are not optimal for their use, and want to know why others are not available to them. Patients naturally seek reassurance, but the reality, if we are to reply honestly to our constituents, is that without expanding the evidence base, it will not be an easy task to maintain the narrative that most people get the best drug all the time. We have a duty to ensure that clinicians and scientists are given the right support from Government to make the ambition of personalised care a reality.
I will respond to the comments made by Mr Mudie, who raised a number of concerns that my constituents have expressed in e-mails to me, in a few minutes.
The British Heart Foundation tells us that its researchers face considerable barriers due to a complex legal framework and the multitude of bodies involved. That is unacceptable, and it is right that we take steps to tackle unnecessary
red tape and barriers to the sharing of information. However, we should also remember the implications. Just this week, we heard that researchers are exploring a test that can identify perfectly healthy patients who are at risk of fatal medical complications based on the proteins in their cells. I do not presume to understand all that, but I recognise the principle that as we have more information, we have the capability to do more, but we remain constrained by the finite budget of the NHS.
On ethics, the hon. Member for Leeds East referred to security of data and the lack of assurance. We have presented the use of data as leading to better outcomes and personalised solutions for patients. We must recognise that there are also enormous ethical implications in respect of the prioritisation of finite resources to treat new conditions and provide new therapies, which may well be just as expensive. So much more will be possible, but it is important that, in parallel with the discussion on access to data, we recognise the challenges of providing an ethical framework for prioritising those finite resources. We will never defeat human frailty altogether, but I want the medical community to reflect on the choices that need to be made to prioritise treatments. Research may find the cure for diabetes or lung cancer, but the second challenge will be to ensure that it is accessible to the population at a time of competition for resources.
Access to data must undoubtedly include safeguards, and obviously there is a lot of scepticism about the reliability of safeguards. My hon. Friend the Member for Mid Norfolk set out five actions that he feels would address some of those concerns. Legitimate questions must be asked on how we handle large amounts of data and ensure that they are used in the right way and for the right purposes. The six-month delay in the consultation is clearly the right time to explore those issues. However, it would be a great shame if we were to miss the opportunity to open up patient data for medical use.
Hon. Members should not rely on the argument, which has been in the headlines of some newspapers, that the data will be used for malign purposes. I instinctively take a positive view of the state. I think it acts in the interests of its citizens, although I am a relatively new Member of Parliament and my optimism may fray if I am still here in the years ahead. I find it deeply frustrating that, when we have the opportunity to relieve suffering and find ways of delivering personalised care for our constituents, we fall back on arguments about the loss of banking data. I listened carefully to what the hon. Member for Leeds East said, but the idea that somebody will know our individual medical histories is pretty unlikely. It would be a real shame if we did not move forward by allowing the data to be accessed more readily.
My hon. Friend the Member for Mid Norfolk is right that Parliament should be involved. It is essential that there are annual reports so we understand where things are moving and the positive outcomes. That would improve public understanding of progress. However, it is deeply wrong to prevent medical science from providing more options for health care. I acknowledge that there are security risks, but it is not beyond the wit of my former industry and the IT industry to work out the necessary protocols and safeguards.
I welcome the opportunity to contribute to the debate. It is right that we are having it, and it is right that we project the Government’s aspirations and hear concerns
about them. I hope the Minister will set out in her response the safeguards that she feels are proportionate and necessary, and explain what the positive outcomes will be for our constituents, who are often frustrated by gaps in provision. The NHS is an incredibly complicated organism, and it is very difficult for a constituency MP to grasp where the problems lie. However, something positive can come from the proposal. I thank once again my hon. Friend the Member for Mid Norfolk for his deep knowledge, enthusiasm and inspiration on this subject.
Peter Bottomley (Worthing West, Conservative)
I congratulate the Backbench Business Committee on allowing this important debate. Ben Goldacre gave some advice in TheGuardian; I cannot be certain whether the article was from 21 or
“if you’re thinking of opting out—wait. If you run care.data—listen.”
This debate will help.
It is sad that most of the public commentary has not mentioned Dame Fiona Caldicott’s review, published in March 2013. It followed up the review that she did in 1996-97. I will not read out the whole executive summary, but she said that we must “justify the purpose” of using or transferring personal confidential data. She continued:
“Don’t use personal confidential data unless it is absolutely necessary…Use the minimum necessary personal confidential data…Access to personal confidential data should be on a strict need-to-know basis…Everyone with access to personal confidential data should be aware of their responsibilities…Comply with the law…The duty to share information can be as important as the duty to protect patient confidentiality”.
Most of the information that the present row is about is not personal confidential data, but anonymised data. Those data are as important to the GP sector as the hospital sector. When Brian Jarman started using publicly available information, he started a process that led to the knowledge about Mid Staffs. There is also the issue of public concern at work or whistleblowing: people who raise problems do not get congratulated, but get criticised, disciplined and treated badly.
The first serious patient confidentiality issue that I came across concerned a doctor who had been in my constituency but was working in Warwickshire. She was sacked and referred to the police, the Information Commissioner and the General Medical Council because she had transferred information about south Asian diabetes patients—those least likely to go to hospital for self-care—to herself at another part of the NHS so she could invite them to attend a meeting to learn how to improve their health.
What Dr Shirine Boardman went through was hell on earth, and it should not have taken someone from outside to point out to the Information Commissioner that to transfer information about a patient for the patient’s benefit from one part of the NHS to another is clearly not a breach of any regulation. The police should have thrown it out within days, not months, and the GMC could have been sharper in saying what the dispute was actually about.
Then there is the case of baby P, in which Dr Sabah Al-Zayyat, an inexperienced locum, was disciplined after Dr Kim Holt had notified Great Ormond Street and others in authority that the level of cover was inadequate. Too often the system finds a victim, but it will not look at itself and ask, “What did we get wrong?”
I have many good doctors in my constituency, but one whom I trust and rely on is Dr Gordon Caldwell. He first alerted me to the fact that the medical training application service—a system for doctors’ training—was not going to work. For months, he and I tried to get to Ministers, medical officers and others in authority. Eventually, when the whole thing blew up, the then Secretary of State for Health said, “Why did nobody tell me?” My reaction was, “I wish you had read some of the replies that you sent to me, and that you had read what I sent to you, to which you replied.”
Dr Caldwell also alerted us to the problem of the NHS IT system. One hospital in each region was going to be sacrificed to a particular version of the system. We managed to put it off for six months, but not bury it. Within six months, the hospital, which had turned over £142 million, had to be given an extra £2 million to do manually what had previously been done satisfactorily by computer because the new computer system did not work.
Let me turn to what Dr Caldwell recommends. He says that the first thing about sharing clinical data is that it should be done from clinician to clinician and that we should know about the big risks of not sharing. Hospital doctors should be able to read the patient’s GP database information in front of the patient. That does not happen normally. GPs should be able to read the hospital notes. That, too, is essential for patient care—safe, swift and timely care. Then we can move on to the question of how data should be accumulated and analysed within the NHS, and then comes the question of how far the accumulated data should go outside the NHS.
I do not get over-excited about the private sector. I thought that my GP and everyone else’s GP had been a private contractor since the founding of the national health service in 1948. However, I do know that only by looking at large data can we find things that matter.
In 1950, Bradford Hill and Richard Doll came out first with the link between smoking and adverse health impacts and also with the effect that asbestos had on the lungs. By the time I started fighting to get into Parliament in the early 1970s, half our political system was still fighting to keep coal miners underground, yet we knew from the pneumoconiosis studies, especially in south Wales, that up to 25% of them or more were getting conditions that, frankly, should be banned under health and safety. The compensation scheme opened in, I think, 1998, applications had to be in by 2004 and 570,000 miners applied because of their lung conditions. Data would have found the information out much faster, and the GP data would have been even more important than the hospital data.
I pay tribute to Peggy Wynn and Arthur Wynn. They said to me, shortly after I got into Parliament in the 1970s, that smoking and excess drinking by parents at or before the time of conception led to a very high increase in the rate of adverse congenital malformations. I put that to the Department of Health. It said it was not so, or probably—more accurately—that there was
no evidence for it. The Wynns had found the evidence. Now that has been confirmed and it is part of the common currency of knowledge.
The question is how we can get things to be known earlier and faster in the right way—how the inquisitive can get access to information, formulate a hypothesis and then find how they might disprove it. They cannot always do that by doing regression analysis and then applying what they have found from that to the data that they used for it, because that is bad science.
The good science is to be inquisitive, find ways of checking, find ways, potentially, of disproving what people are after—what they think they have found—and then they can spread it around. That includes some of the medical treatments—not just the physical treatments, but, as my hon. Friend George Freeman said, the pharmacological ones. There is also talk about gene therapy, which is after my time.
I believe that it is possible to deal with people’s fears, and without eliminating all risk of any breach at any time. I shall interrupt myself to say that Ben Goldacre says that he is now a father of twins. He gives their age in his article and shows how that could identify him. That is fair enough, but there are those who worry about insurance companies. If I go to an insurance company and say, “Will you please insure my life?”, they will say, “What are your conditions?” I say, “I’ve had a non-malignant basal carcinoma and I stopped smoking in 1986” and various other things about my life. What do they need to go for big data for to find out what I have to tell them to get cover or to be able to have a successful claim if I have not told them?
Then we start saying, “Why can’t we get good new drugs to everyone at once?” That is partly because of money and partly because of the National Institute for Health and Clinical Excellence approval system, but the question about how we can get new treatments and drugs to people arises only because they have been developed, and they tend to be developed because someone has had an idea, has done trials and tests and taken the data. Incidentally, I say this to those who get frightfully worried about data. If the reporting system shows that there is or could be a problem with a particular treatment, what happens? The pharmaceutical company is required to go to the research database and see what information can be found there. There is a lot of information around and a lot of it is being used.
This is where I come back to my friends or so-called friends at SumOfUs and 38 Degrees. I do not want to spend my time criticising people who are activists and concerned with public policy. I am very happy to have debates about that. I do sometimes make rude remarks about their campaigning system and how they sometimes have a lack of common sense, foresight or understanding, which I once summed up, famously, in the word “stupid”. But I will say this to the SumOfUs campaign. When it did its question in the YouGov poll, did it say anything about the potential benefits of the data for patients?
There are members of my family who are alive today because of checking on how treatments worked and the conditions that they later got. I am grateful for that. I happen to be part of the Biobank research project, which takes all the data on the people involved. It watches us; it can look at our records. It does not tell us if it finds anything that is useful to us, but it does help other people. I am part of the NHS INTERVAL study
to see whether people can give blood every eight weeks, 10 weeks, 12 weeks or whatever. If I could persuade my wife, my body would go off when still warm to be mucked about with by medical students or others who want to practise on dead bodies before they start working on live people.
All those things I regard as perfectly sensible and satisfactory and as much part of public service as standing here and making this speech. I will not claim that everything that has been done around this care.data project is perfect, but I will say that those who raised the scare ought to be able to say, “We’ll contribute to making it work, so that we can say to everyone: ‘Don’t opt out. Stay in and be of value to others.’” That is part of what I call community.
Andrew Gwynne (Shadow Minister (Health); Denton and Reddish, Labour)
It is a pleasure, as ever, to serve under your chairmanship, Mr Amess. I congratulate George Freeman on securing this timely and important debate and on his extremely thoughtful and powerful opening contribution. I congratulate other hon. Members on their contributions, too.
I know how strongly the hon. Member for Mid Norfolk feels about this issue, and he is right. He has been instrumental in establishing the Patients4Data group. I commend also the work of the co-founder, Graham Silk, and of Patients4Data in campaigning for the opening up of data in the national health service. That group has been very good at bringing the issue of patient data to the forefront of debate on health policy across England. I was pleased to share a platform with the hon. Gentleman earlier today at the summit that he hosted in Parliament.
It goes without saying that a growing population, an ageing population, the rise of co-morbidities and the necessary drive to improve the quality of care and treatments available to patients mean that, in future, the success of the NHS will increasingly rely on the data to which it has access. Indeed, if we take as a starting point the fact that the health and social care worlds, through both desirability and financial factors, are heading towards proper and full integration, it goes without saying that in breaking down the structural silos between the NHS and social care and, within the NHS, between community services, acute services, primary care services and mental health services, we also need to break down the information silo mentality in the NHS.
Genuine “whole person” care will require “whole person” information. Let me put the current controversy over care.data to one side for the time being. The fundamental principle is to create a system designed to link together medical records from general practice with data from hospital activity and eventually extend that to cover all care settings inside and outside hospital. As even my hon. Friend Mr Mudie said, no one wants to wreck that. It is a really good thing for the future of health and social care in this country.
The improvement of health care in England depends on the removal of the barriers between primary and secondary care—between the GP, the surgery and the district general hospital, and between social care providers and traditional health care providers. Integration is the key to meeting the needs of patients, and the availability
of integrated data is central to shaping the services that will meet those needs. It is in that context that the need for data sharing should be seen.
Let me make it clear to the House that Labour supports the principle behind the proposal. Whole-person care must have at its heart a whole-person approach to information. It is important that key statistics drawn from that data set can be used to further clinical research or even future service planning. Let us not forget that if it were not for medical data sharing, the link between thalidomide and deformities at birth would never have been identified, and it would have taken decades longer to establish clearly and definitively the link between smoking and lung cancer, which Sir Peter Bottomley mentioned. Good medicine is determined by access to good data.
If we are to improve the lives of our children and reduce health inequalities, we must ensure that data are readily available to researchers. Making data at the local GP practice level available for the first time will give us an unprecedented insight into local health outcomes. Which GPs are over-prescribing antibiotics or antidepressants? What factors are causing delays to early diagnosis of cancer? If we are truly to tackle health inequalities, which are a huge issue in a constituency such as mine, we need a joined-up approach. That is simply not possible without ready access to data.
Most people readily recognise the clear benefits of a data-sharing scheme, but there is rightful concern about how the care.data initiative has been implemented so far. Mistrust of care.data is not surprising given the nature of the data involved and the typically haphazard communication about the scheme, particularly the opt-out programme for patients who do not wish to take part. Many people did not even know that the scheme was happening in the first place, at least until the recent media reports. To be fair, if the only information that someone has about care.data is what they have read in the newspapers, they will probably get on the phone to their GP to make an appointment to opt out straight away.
I do not know whether it is the result of incompetence, a reflection on how we live our lives today or a combination of both, but the conventional methods of public information campaigns simply have not worked. Every home in England should have received the leaflet entitled “Better information means better care”, which my hon. Friend the Member for Leeds East happily brought with him.
The blunt truth, however, is that most people either have not received the leaflet or have not looked at it. Questioning of Ministers during the recent Committee stage of the Care Bill, in which approval for care.data sits, revealed that even Ministers do not know whether every house has received the leaflet, what the opt-out rate is or what the regional variations are.
Although I do not get to see much TV these days—such is the nature of the job we do—the first I saw of the advert for care.data was on BBC “Newsnight” last week. That is an important point for Governments of all political persuasions. As I said at the summit earlier, if we think back to the success of some of the big public health campaigns, such as the “AIDS: don’t die of ignorance” campaign nearly 30 years ago, we remember
the hard-hitting TV adverts, the big posters with the tombstone on and the powerful leaflets. Today, as my hon. Friend the Member for Leeds East pointed out, we are bombarded with so much junk mail—pizza menus, UPVC window offers, supermarket offers and, dare I say it, even the odd political leaflet—
Andrew Gwynne (Shadow Minister (Health); Denton and Reddish, Labour)
It certainly is a two-horse race in my constituency; do not let the Liberals tell you otherwise. The point is that it is very easy for someone to miss the leaflet about care.data even if they received it. I received it and I read it, but I think that is probably the neurosis of politicians; when a leaflet comes through the door, we automatically think that our opponents have started the general election 16 months early.
Many of my neighbours, who I assume must have received the leaflet, claim that they did not. Likewise, we can easily skip the adverts on TV. In my home, we have Sky Plus, that wonderful technology that allows us to press fast forward as soon as the advert break starts and skip all the adverts. Conventional methods now fail to penetrate with the vast majority of the general public. We probably need to implement a more personalised approach to make the public aware of the scheme, of the benefits, of the implications and of their individual rights.
Incredibly, we have heard stories of people who want to opt out of the system and have had to make an appointment with their already overburdened GPs to do so. I do not think that that is necessarily the right approach. GPs are already struggling to use their time to deliver good quality general practice and primary care services, and perhaps an easier way to allow people to opt out using a variety of methods should be explored. As the Minister will be aware, the chief executives of Mencap, Sense, the Royal National Institute of Blind People, the National Autistic Society and Action on Hearing Loss have written to the Secretary of State expressing concerns that information about care.data is not being communicated in an accessible way to disabled people, who are consequently being deprived of the opportunity to make an informed choice about the future of their medical records.
We want care.data to work, and it is in everyone’s interests that it does, but—this is where the pause is welcome—the Government need to get a grip before the aims of the project are lost on a suspicious public anxious about what care.data is for and how their personal data will be used. That risks compromising a project that I think we all recognise to be vital. The proposal by the hon. Member for Mid Norfolk for the Government to establish a working group of campaigners and opponents—their inclusion is important—to try to resolve the differences is a sensible way forward. Consensus is the key here.
The Government must understand that the data do not belong to them or to the NHS, but to each of us individually. That should be the starting premise. The combined data that the NHS holds about me is mine and no one else’s, and that should be enshrined. Only then will the Government be able to make the case that inappropriate use of the data could never be sanctioned.
Let us be honest—if the data are mine and they are recognised to be so, that is empowering for me as an individual and a patient. “No decision about me, without me” has been the mantra of Ministers of all political parties in the Department for some years, but how about “no information about me, without me” as the next guiding principle? Our most intimate details are wrapped up in this system. The Government will be able to shore up public and institutional support only when they have convinced the public that the data will not and cannot be abused, and when they have been honest about the potential risks.
The data are owned by the patient, and all parts of the NHS must be their legal custodian. Rights and proper responsibilities must go together: the legal responsibility to use data for necessary purposes, and only for necessary purposes, with proper safeguards in place and, to agree with my hon. Friend the Member for Leeds East, tougher sanctions to underpin them. We need to convey to the public the laudable intention behind the proposals, because even professional trust in the programme is so low that a poll for the Medical Protection Society found that 80% of family doctors believed that the system could undermine public confidence in the principle of medical confidentiality.
Peter Bottomley (Worthing West, Conservative)
I often try to look at the questions that people are asked. I am not absolutely certain that doctors were asked, “On balance, would you recommend that people stay in to contribute their information for the benefit of all?”
Andrew Gwynne (Shadow Minister (Health); Denton and Reddish, Labour)
I entirely take the hon. Gentleman’s point, but if we are to reintroduce the element of public confidence, enshrining proper rights and responsibilities will start to build that sense of trust. As the hon. Member for Mid Norfolk suggested, it is consensus that will get us where we want and need to be.
One example of the problems that can arise lies in recent media reports, which we have heard about again in this debate, including those about the Institute and Faculty of Actuaries, which obtained at least 13 years of hospital data equating to 47 million patients. Often, media reports are not quite what they seem, but the damage is, sadly, done as a consequence. I would hate for the benefits of information sharing within the NHS, and of drawing out anonymised data sets from that system for beneficial medical research, to be jeopardised by incorrect assumptions made from media reports. There would be rightful public revulsion if identifiable or cross-identifiable information were to fall into the hands of insurers and other private interests that do not have the public good in mind, but such reports are potentially damaging to public confidence in care.data, which is already quite low.
That is why we welcome the Government’s decision to pause the scheme. I hope that they will use the opportunity wisely to reflect on how better to engage with the public about the real benefits that we have discussed in this debate, and to revolutionise patients’ rights: make the data theirs; make the NHS their custodian; put in real safeguards and, importantly, proper penalties; and have rights with responsibilities and whole-person information for the age of whole-person care. That would be genuinely transformational.
I reiterate to the Minister that we are happy to support the measures in the House, but as it stands, we fear that the security regime is woefully inadequate. There is still time to save it, and we on the Labour Front Bench have offered the Secretary of State for Health our full support if he can come up with an offer that satisfies everyone. On Tuesday, those points were put to the Health Secretary at Health questions by my right hon. Friend Andy Burnham, the shadow Health Secretary. Maybe the desire for consensus and a way forward is sometimes lost in the theatre of the Chamber of the House of Commons, so I repeat those points to the Minister in this debate, which has been much more consensual and informative than it would ever be on the Floor of the House during Health questions. I sincerely hope that she will respond to them positively.
There are five key protections that Labour wants to introduce. First, we want tougher penalties for any misuse of data; my hon. Friend the Member for Leeds East made that point far more eloquently than I. We also want to keep the requirement for the Secretary of State to sign off on any new application to access the data, which the Government are seeking to remove in the Care Bill. Accountability to the Secretary of State, to Parliament and to us as Members of Parliament on behalf of our constituents is a fundamental requirement that would start to satisfy the need for oversight.
We want and need full transparency for all organisations granted access to the data, so there is full openness about who has access and what data they have. We need a proper targeted and personalised awareness campaign for people with a learning disability, autism or sensory impairments, so we think that GPs should be issued with clear guidance to ensure that all of their patients are informed. We want easier opt-out arrangements than those possible at present. If the Secretary of State is happy to ensure that the new provisions are in place, we are happy to lend our support to make it happen.
In closing, I should say that confidentiality has always had a tense relationship with scientific progress when it comes to clinical research, but it is only right that information is made available outside the NHS in a completely anonymised form. The hon. Member for Mid Norfolk is quite right about clinical data: their potential is enormous, they can revolutionise systems and processes and they can get to the heart of problems in certain areas far sooner. It is hugely empowering for future patients to get away not just from the silo mentalities of the structures of our health and social care system—all parties want to do that—but from the silo mentality about data that exists in parts of the health and social care system: whole-person care and whole-person information.
I commend the hon. Member for Mid Norfolk for his work on this hugely important issue and congratulate him on securing this important debate, on the summit in Parliament earlier today and on the work that he is doing alongside patients for data. Hopefully, we can get some movement on this from the Government, so that we end up with a scheme with the appropriate safeguards. I look forward to the Minister’s response.
Jane Ellison (The Parliamentary Under-Secretary of State for Health; Battersea, Conservative)
It is a pleasure to serve under your chairmanship, Mr Amess. I congratulate my hon. Friend
George Freeman, as has everyone else, on securing the debate, as well as all the Members who have contributed to this thoughtful debate. I must start with an apology for not being the Under-Secretary of State for Health, my hon. Friend Dr Poulter, who is otherwise engaged on important business, but I will do my best to stand in for him in this area of his portfolio. If there is anything to which I am unable to respond during the debate, I undertake to do so afterwards.
I add to the voices that have welcomed the work of my hon. Friend the Member for Mid Norfolk on developing the Patients4Data website and other work, and have praised its co-founder, Graham Silk, and all its supporters. I particularly thank my hon. Friend for bringing such a calm, rational and well-informed voice, which is ever more needed in our public discourse. He has become a respected voice throughout the House in this area of expertise for that reason, and has amply demonstrated it again.
The Government support the sentiments outlined in the private Member’s Bill that my hon. Friend introduced. They are in line with the Government’s information strategy for health and care in England, “The power of information: Putting all of us in control of the health and care information we need”, which was published in 2012. His proposed Bill would provide for ownership of, and access to, patient records and health data to empower patients in everyday health care and research. He has outlined the principles in more detail today. The Bill would create a new statutory duty of care on NHS professionals to use and update information and ensure that the next professional on the patient’s care pathway is using properly maintained patient records.
I want briefly to deal with those two areas in turn, and, as Members would expect, I will then touch on some of the aspects of care data that have been explored during the debate. The Government feel that there is no need for legislation to provide ownership and access to patient records—the shadow Minister touched on that. Patients already have the legal right to access information in their own health and care records, but it has not been easy get it because it means requesting paper copies, and people might be charged. Easily accessing records online does not require changes to the law, but it is a big challenge to the culture and practices of many health and care organisations and professionals.
The NHS Future Forum emphasised the required cultural shift and the importance of health and social care operating
“as if it is the patient’s or service user’s data”.
The shadow Minister made a good point about the fact that integrating data naturally follows integrating care. The Government’s information strategy stresses the need for a change in culture and mindset, in which health and care professionals, organisations and systems recognise that information in our care records is fundamentally about us. It can therefore become normal for us to access our records easily.
The information strategy also makes it clear that patients will be able to access their own health and care records online; review those records, including test results;
refer back to them during the course of care; and benefit by sharing, if they choose, that information with a range of other people who they want to help them with the care and support they need, when they need it. However, to alter legal ownership of patient records is a difficult way forward. Information is not property in the sense in which physical objects are, but is subject to intellectual property rights, common law confidentiality rights and obligations, and rights and obligations under the Data Protection Act 1998. Ownership implies a level of control over a record that is unrealistic and impractical for NHS medical records.
Let me outline why that is the case. Patients cannot, and should not, control what a clinician writes in a record, nor should they be able to delete items from a complete record. However, it is right that patients should be empowered to use the information in their records, for example by scrutinising their records for potential errors, or accessing them to help to manage their care. Colleagues might find it interesting to know that NHS England has committed to ensuring that people will be able to access their GP record online by March 2015. That is a real commitment and is in the NHS mandate. Ministers will, of course, hold it to account on that.
The law already provides individuals with considerable control over medical records should they choose to exert their rights, but it also provides a balance that protects the interests of those who provide care, and enables them to respond to complaints or litigation, monitor the quality of care they are providing, and learn lessons to improve the care of others. My hon. Friend the Member for Mid Norfolk gave a personal example of where that would have been helpful to him, and I have similar personal experience of where someone being able to give such easy access to their data would have been enormously useful. That is also ever more relevant to a sandwich generation of the age of some of us in the Chamber who are caring for the generation below and the generation above. My hon. Friend brought that relevant point very much to life.
On the duty on professionals to share data, sharing information is pivotal to improving the quality, safety and effectiveness of our care, as well as our own experiences of care. It is also critical to modernising care through raising quality, improving outcomes and reducing inequalities—now a legal duty—as well as improving productivity and efficiency. My hon. Friend John Glen mentioned the Caldicott review, which outlined the many benefits of sharing data, as well as the cultural change required to create a rebalancing of sharing and protecting information that is in patients’ and service users’ interests.
Peter Bottomley (Worthing West, Conservative)
My hon. Friend has prompted me to remember half a sentence I meant to say when I was talking about the baby P case. If all the medical contacts with baby P had been brought together in one place, any clinician would have known that there was a major problem.
Jane Ellison (The Parliamentary Under-Secretary of State for Health; Battersea, Conservative)
My hon. Friend gives a perfect illustration of the point. We have all, particularly as MPs, encountered people who say, “Oh no—data protection!” and obfuscate in some way, but what they say is almost always absolute nonsense. There are lots of existing legal requirements to share data where needed to protect and look after
people. We recognise the valuable role that my hon. Friend has played in making and championing that point.
The Secretary of State has challenged the NHS to go digital by 2018. That will help the sharing of patient records across the whole medial pathway. I echo and welcome the general point made by my hon. Friend the Member for Mid Norfolk on technology and its empowering possibilities. As public health Minister, that is very close to my heart. Of all the demographic surveys and insights into people’s situations that I see, the factor that defies the usual arc of deprivation is the ownership of a mobile phone. That is a great democratising piece of technology and I am keen to see that we use it more and give it more potential to put power into the hands of the previously powerless in this sphere of our lives.
On Government support for the concept of data sharing and the unique identifier, my hon. Friend has been working closely with officials from my Department. We have welcomed that working relationship. Officials have been exploring possible avenues for legislation to ensure that the sentiments outlined in my hon. Friend’s private Member’s Bill and his speech can be taken forward. We are all hoping for a successful outcome in the private Member’s ballot so that we can make progress.
Data-sharing options and the provision of clear guidance that underlines the need for sharing and clarifies what the law already allows are being considered. We are considering placing a duty to share on commissioners and providers. That would force such organisations to ensure that contracts include such a duty to help to change the culture and mindset so that we share data when we need to.
In addition, we are considering introducing a measure to ensure the consistent use of the unique patient identifier—the NHS number—across the whole health and care system. The intervention made by my hon. Friend Sir Peter Bottomley illustrated why it is so important that, when we know critical things about a patient, we join them up. The easiest way to do that is by consistently using their unique identifier. The use of the NHS number will unify and standardise the recording and use of information for the benefit of both patients and clinicians. We have heard examples, and I am sure we can think of others. The Government are working on ways in which to ensure that measures are introduced on the duty to share and the use of NHS numbers.
Sharing information for medical research has demonstrated the many benefits that it can bring to us all in society, and that has been extremely well articulated today. I will shortly address the concerns expressed by Mr Mudie. Members have touched on issues—including cancer, heart disease and diabetes, to name just a few—that have benefited greatly from the sharing of data, and treatments have been found for seriously ill patients.
For reasons I will explain, I want to turn relatively briefly to the care.data programme. It has been much discussed in the House, sometimes heatedly but sometimes calmly, as it has been today. Members have made various points about the programme. My view, which I think is shared in principle by everyone in the Chamber, is that overall the care.data programme is, or has the potential to be, a good thing, for all the reasons outlined by my
hon. Friend the Member for Mid Norfolk and others. It offers a great deal to help us to bring benefits to patients. We have heard examples about detecting the problems at Mid Staffs, about autism and the disproven link with MMR, and about thalidomide.
I want to add an example that falls within my portfolio. In health care discussions, there is sometimes a tendency to think that we are moving forward only from the base we already have—that we bank all the existing benefits, progress and discoveries and move forward from that point. However, an area of great concern to people in this country and around the world is the development of anti-microbial resistance and the work required on that. The number of drug resistant conditions is growing, and that is frightening.
We hope that the ability to scrutinise the data will allow us to understand the pattern of growth of drug resistance, because that threatens to take us several steps back from what we assume to be our basic level of health care: the things that we have in our armoury against disease. It is something we need to take very seriously, otherwise there will be a great economic and human cost.
It is clear that most people agree with care.data’s aims, but they have justifiable concerns about how they are being implemented. People want more information and details about how the programme will actually work. That has been well articulated by various colleagues during this debate. People want rights over how their health and care data, especially data that identify them, are used.
Before I became an MP, I worked for a large national retailer organising large national marketing campaigns, so I could probably entirely occupy another debate on the vagaries or otherwise of door drops and the mix of communications needed to reach most people. I say “most people”, because it is almost impossible to design a programme that reaches everyone in a way that they remember. We might reach everyone, but an awful lot of quite good factual detail has proven that there will always be some people who do not believe they have been reached. We have to reach a reasonable level of breakthrough and cut-through with the messaging. I think that is well understood after the last couple of weeks of debate.
I understand but do not entirely share the cynicism of the hon. Member for Leeds East with regard to big Government and large institutions. I lean slightly more towards my hon. Friend the Member for Salisbury—perhaps for the same reasons, because we both came into the House in 2010—and his slightly more optimistic view on life. I meet people in the health system all the time—every day, every week—who have dedicated a lifetime to patient care and to trying to understand how we can make the human condition better. I also meet people wanting to achieve great things, and perhaps we all sometimes forget that we have to take people with us on the journey, and we need to explain.
The hon. Member for Leeds East also touched on a point that has been well made recently, which is to be honest about the benefits versus the risks. I agree, but I think he overdid the risks; he focused almost exclusively on them. However, he is right to say that we have to have a balance between the two, and we have to articulate that. Ironically, people will trust us more if we tell them about the risks as well as the benefits. I really believe
that transparency drives greater trust, and I think that point has been made elsewhere. I read the article by Ben Goldacre, and my hon. Friend Dr Wollaston has articulated it as well. The more transparent we can be about the balance, the better it is.
On the way people view data and balance risk in everyday life, we see the world rapidly changing all the time. The information that people put out about themselves in the public domain in exchange for ease of access, convenience, speed or economy is quite surprising, so perhaps attitudes are changing around where the balance lies. Nevertheless, we need to explain it. Picking up the shadow Minister’s point, we particularly need to explain it and be open about it with those who perhaps are least able to understand the risk versus benefit balance. That is a good point, and I will take it away with me.
We have a period for reflection. The delay in the extraction of the first data means the data collection from GPs’ surgeries will now begin in the autumn, rather than in April this year. It will allow for more time to build up our understanding on the benefits of using the information, the safeguards in place, and how people can opt out. NHS England informs us that it does know how to make it easier for people to opt out if they wish to and that that can be done by phone. That is one of the points picked up in the debate.
We need to highlight the interdependency of trust and the levels of opt-out, because we do not want people to opt out for the wrong reasons. If they want to opt out for the right reasons, because they have made a balanced assessment, that is absolutely fine; it is their right. I share and echo the sentiments of those who are concerned, but I would advise them to wait a bit, see what happens during this time of reflection and make an assessment of where we get to before doing something that might be based on what is going on in the media at the moment.
I want to reassure the Chamber that the Secretary of State for Health, my ministerial colleagues and I are listening to all the concerns. I am not in a position to respond to some of the specifics. We recognise the points made by Opposition Front Benchers—articulated again today—and we are looking carefully at the issues. If need be, safeguards will be put in place over and above what NHS England does as part of its own engagement, and that will help to build public confidence. I cannot go into detail today, but considerable thought is being given to the issues, and when we can comment and add clarity, we certainly will.
Today’s debate has been a timely opportunity. It goes without saying that I will report back to ministerial colleagues who lead on this to draw their attention to the points that have been made, particularly the points about transparency, security and information for the public. Both aspects of the private Member’s Bill championed by my hon. Friend the Member for Mid Norfolk are being worked on. They featured as the
main thrust of his speech today. The Government are keen to ensure that the measures are taken forward. We believe that sharing information for medical research has demonstrated the many benefits it can bring to us all in society.
Before I close, I should mention—I think it is useful for colleagues—the Institute and Faculty of Actuaries and the data it used. I think the shadow Minister also alluded to it. I want to put on the record that the data it used was publicly available, non-identifiable and in aggregate form. They were used not to analyse individual insurance premiums, but general variances in critical illness. The information was used to ensure premiums were fair, not to calculate individual premiums.
The moneys paid to the Health and Social Care Information Centre were for administration costs to compile the data, and of course the Health and Social Care Act 2012 has set stronger legislative safeguards. That does not mean that the information was wrongly given; it does not mean that that organisation has said that greater scrutiny should not be applied. However, for the sake of being straight with the public about the balance of risk, it is important to put what happened in that particular instance on the record.
To conclude, the Government are actively looking at what we can do to promote the sharing of data in a safe and secure way, using the NHS number to help connect medical records across the whole health and care system as we move between services. That, as well as professionals being able to access relevant records online simply, securely and all in one place—for example, via clinical portals—will enable more joined-up care. Together with the points I have made about care.data and the potential that that has, which others have articulated, I think we know there is an enormous prize in our grasp, but we know we will win that prize only if we are very careful and thoughtful about how we proceed, taking the public with us. This afternoon’s debate has greatly added to our thinking around that.
George Freeman (Mid Norfolk, Conservative)
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.