Digital Records in the NHS

Geoffrey Clifton-Brown Excerpts

Thursday 28th April 2016 Westminster Hall

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

I beg to move,

That this House has considered use of digital records in the NHS.

I am delighted to serve under your chairmanship, Mr Wilson, and grateful to you and Mr Speaker for the opportunity to debate this matter. I am delighted to see my hon. Friend the Member for South Basildon and East Thurrock (Stephen Metcalfe) in his place.

The issue of data is of transformative significance for the NHS. The health service has so many interactions with patients on a daily basis that it creates an enormous amount of health data that have a huge number of practical applications for those who know how to analyse the data correctly. With more patients being treated, more work being done on access to drugs, and massive breakthroughs in genomics and the study of rare diseases, the NHS must use IT effectively to digitise patient records and allow clinicians to harness the power of such valuable data. That is the essence of this debate.

My involvement in this subject area began through my late constituent, Les Halpin, who was diagnosed with the dreadful motor neurone disease in 2011. Les was one of the country’s foremost statisticians by profession, and a gifted mathematician with an inquisitive brain. He quickly realised that the numbers were stacked against him—when I first met him, he was absolutely clear that he had between a couple of months and a couple of years to live, about which he was absolutely stoical—and furthermore that the money spent on new drugs was widely out of kilter with the output.

Rather than take on the treatment of and research into MND directly, as that was already catered for by a number of non-governmental organisations, Les set his sights on tackling the system more widely. Understanding that the system he wanted to change was governed by the regulatory and political world, he began the Empower: Access to Medicine campaign. As a statistician, he knew better than anyone that it is information that furthers medical research. Empower taking on this debate is therefore the logical extension of his original work. Les died while on the waiting list for new treatments, for there had been no new treatment for MND for more than 20 years.

Through comprehensive engagement across Government, industry and the academic world, Empower helped to secure a major positive change for patients, known as the early access to medicine scheme. Working with a number of patient and medical campaign groups—Joining Jack, the Duchenne Children’s Trust and the Genetic Alliance UK, to name just a few—Empower hosted a summit in the House of Commons, at which the Department of Health launched its new early access scheme, with Empower’s support.

On 23 February, I hosted the parliamentary launch of Empower: Data4Health—my hon. Friend the Member for Bury St Edmunds (Jo Churchill) was present; perhaps other Members were as well—which is the next stage of this work and falls under the subject of this debate. The new campaign brings together politicians, clinicians and patients and calls for an NHS that uses state-of-the-art IT to collate and analyse health data to improve outcomes for patients. The campaign is a natural continuation of Les’s work, because it seeks to create an NHS that uses anonymised patient data to identify new treatments, effective new drugs and even repurposed drugs that can have major benefits for sufferers of rare or life-limiting diseases.

To my mind, there are three ways of deploying this IT effectively in the NHS—this is part of a wider debate, but it is worth mentioning here. First, with the right technology, data can be analysed for particular cohorts of disease sufferers to look for trends, monitor the effects of new drugs treatments and therapies and, ultimately, improve patients’ information about their own conditions, patient outcomes, and access to medicines or other treatments that are right for them.

Incidentally, we are seeing growing evidence of repurposed drugs being used to treat a variety of diseases that they were not originally intended for, with some success. For example, recent research suggests that some statins—drugs generally used to control cholesterol—can affect the treatment of brain tumours. Before such research can be turned into real treatment options for patients, we need to be able to use modern technology and digital records to flag where patients are receiving that treatment and look at the effects across a much larger cohort.

The potential offered by using IT to identify new treatments and trends could fundamentally change how the NHS operates. Indeed, the Science and Technology Committee recently reported that the value of big data to the health sector will equate to £14.4 billion by 2017. In fact, some consultants have found that efficiency savings between £16 billion and £66 billion could be generated in the NHS were the data deployed properly.

Once we start to use data, we can leverage the value of the intellectual property, which is created in a number of ways, by using it to incentivise GPs or clinicians to pursue certain treatment paths; by funding patient interest groups and other bodies; and, ultimately, by selling the IP to drug companies to speed up the development of new drugs. The whole thing then becomes a virtuous circle.

The second key benefit of IT and digital records is that they enable us to address the lack of co-ordination in the NHS. Clinicians will be able to monitor what is happening to a patient cohort for a particular disease across the country, rather than re-invent the wheel when approving treatment. Digital records will enable different teams to co-ordinate across one or a number of hospitals, synchronise appointments and ensure that all clinicians are fully informed of how their treatment is interacting with a patient. That should lead to the best possible outcomes for patients, and enable co-ordination across the health service.

Thirdly, patients will have more control over their own health information. In an age in which the use of medical self-diagnostic tools is on the rise, patients will be able to control—possibly remotely or at home—the data produced by the diagnostic machines; view them in whatever form they like; use them to inform their self-care; and feed them remotely, through IT, back to clinicians, who if necessary can modify the patient’s treatment. Treating people remotely will prevent unnecessary hospital visits and visits to clinicians.

Fourthly, once we start collecting data on patient outcomes, we will be able to drive processes within the NHS, identify things that are taking too long and work that is being duplicated, and ultimately save the NHS money on its day-to-day processes and tests. For example, we will be able to transfer huge amounts of data across different systems in the NHS. New patient tests are emerging almost weekly, which produce data that can be transferred across different parts of the NHS more efficiently. In those four ways, IT can transform the NHS.

Members from all parties, members of the public and clinicians have concerns about data privacy, and I would like to tackle that point head-on. I thought that some Members might be here to speak about their concerns about privacy and data protection. Some of those concerns are serious and legitimate; it is no use pretending that they are not. We all hear horror stories from our constituents about NHS trusts mishandling data, losing records and sharing inappropriate information. When this debate was granted, a member of the public contacted me to bring to my attention his experience of massive data breaches by one NHS trust, which is alleged to have consistently failed to adhere to data protection principles and to have hidden its failings from NHS England. Make no mistake: concerns about the handling of patient data are very real.

That member of the public highlighted that data protection breaches are regrettably already taking place. One of the purposes of this debate is to highlight the need for a national framework for digital records with built-in safeguards to protect patient privacy, and for genuine national accountability for trusts. We need to generate a debate on that subject. No patient record system is absolutely secure. Even the old-fashioned paper system is not absolutely secure, because it can leak: people can get into files, access the data and pass them on in an unauthorised way. With modern technology, we ought to be able to protect patient records.

Digital records may ring alarm bells with some patients, such as that member of the public, so it is imperative that the Government develop a comprehensive public information campaign on the enormous treatment benefits, which I have outlined, that health data can provide. We must convince the public that the benefits of the effective use of IT in the NHS far outweigh the potential obstacles and pitfalls that there may be along the way. We have the technology to keep patient data safe. A fear of errors should not paralyse progress on this issue.

There are some great examples of things happening across the country. For example, the Cystic Fibrosis Trust has done incredible work in putting together a patient registry of more than 99% of all cystic fibrosis sufferers. As I am sure all Members realise, cystic fibrosis is a horrible disease. Babies born with it cannot breathe properly and need continuous treatment for the whole of their often only too short lives. The first new-generation genotypic drugs are beginning to be introduced, and by using patient data to measure their effectiveness and possible side effects we can begin to make real progress on rare diseases such as cystic fibrosis.

The Cystic Fibrosis Trust operates a strict evaluation process, overseen by a committee of experts, to ensure that its registry data are used in line with patients’ consent. It is interesting that those with that debilitating disease realise the effect that IT can have and have willingly given permission for their data to be used in that way. That is an example of the importance of patient buy-in to IT patient records. Thanks to the Cystic Fibrosis Trust’s determination to promote and maintain its registry, we are seeing new treatments for particular strains of CF, which completely alleviate the dreadful symptoms that I outlined in young babies, who would otherwise die prematurely, and enable them to live a relatively normal life. Proper deployment of IT in a digital NHS would enable us to develop similar drugs for suffers of all sorts of rare and debilitating illnesses.

A shining example of what I am outlining is happening in Birmingham, where clinicians are trailblazing in this area. They are an example of what we hope will happen nationally. The University Hospitals Birmingham NHS Foundation Trust uses electronic patient records. Since 2011, all records have been electronic. Its commitment to innovation has allowed for some remarkable projects, such as Cure Leukaemia, which was established in 2003 to enable patients with blood cancer to access effective new treatments. In 2005, it helped to secure a £2.2 million grant to build the Centre for Clinical Haematology at the Queen Elizabeth hospital in Birmingham. It resulted in the development of the second-largest adult stem cell transplant programme in the United Kingdom. The impact of Cure Leukaemia and the Centre for Clinical Haematology in Birmingham is closely linked to the distinct make-up of the west midlands and the fact that they use IT in the way that we propose. With a population of 5.5 million and the most ethnically diverse catchment area in Europe, the west midlands offers access to the broadest possible data pool for drugs trials.

Over the past decade, Cure Leukaemia has funded a network of 15 specialist nurses, who work across the west midlands and administer pioneering drug treatments to leukaemia-suffering patients. The combination of the west midlands’ unique demographic and the network of well-supported nurses has enabled us to leverage millions of pounds-worth of pioneering drugs and give patients access to clinical trials for drugs not readily available in the rest of the NHS. Cure Leukaemia’s founder, Graham Silk, is also a member of the Empower: Data4Health campaign. Graham’s hope is that, one day, everyone will be able to benefit as he has from the amazing work being done with digital records in the west midlands.

The medical community see the advantages that digital records can bring to the NHS. The Royal College of Physicians believes:

“Fully digital patient records will bring benefits to the NHS, but to do so they need to be based on standards for the structure and content. Common standards are essential to enable interoperability between digital records in different care settings.”

The RCP goes on to list the benefits that digital records can bring, and I will take them in turn.

First, digital records have the potential to improve the quality of patient care. The people at the RCP believe that, with fully digital records, it will be

“easier for care professionals to bring together a person-centred view of the patient from all the disparate records held in different settings and over time. They believe digital records will improve communication between professionals in different care settings and that it will be easier to drive timely, relevant automatic clinical alerts. They believe that digital records can improve safety by reducing errors in transcription of paper documents and they are of the opinion that it will be easier for patients to access their records for self-care purposes”—

something I have already outlined.

The second major benefit comes in NHS quality improvement and research activities. That is very much the key theme of my speech today. The RCP states that digital records could provide:

“Much improved ability to carry out records-based research (with appropriate protection of confidential data and respect for those who wish to opt out)”—

my buy-in point—

“and support for the development of stratified medicine which enables doctors to provide patients with specific treatments according to individual needs. It requires the collection of genotype (information on an individual’s genetics) and phenotype (lifestyle and environmental information) from patients.”

The final benefit that the RCP highlights is the potential cost saving. With the NHS under increasing pressure, because of a variety of factors, the importance of opportunities to do more for less, while protecting patient outcomes, should not be dismissed. The RCP believes that the potential cost savings could come from reduced duplication of test orders and unsuccessful treatment, fewer errors and reduced time spent on searching for missing paper records.

I want to give a powerful example that really sums up what this is all about. Using IT and patient data to improve access to breakthrough treatments and personalised medicine is, fundamentally, about patients who are looking for answers and for some hope, not only for themselves, but for everyone in a similar situation. At this point, I want to mention a remarkable woman from my constituency, Christina Knudsen. Christina can explain her situation and her journey far more effectively than I ever could. If you will permit me, Mr Wilson, I will read the words she sent to me:

“The unusual aspect of my situation is that I am relatively young, midforties, and otherwise very healthy, sporty, have a positive mindset and have no cancer in my DNA. Where the illness originates from is a mystery (I personally believe it is from emotional stress from an unusually challenging childhood) and like many cancers, it seems to have been unprovoked. Unfortunately, we do not yet have a nationwide dataset of patients with ampullary cancer that could be used to cross-reference symptoms and treatments. This would, in my case, be a vital resource. It would not only allow doctors to help pinpoint the cause, but also make an informed decision on my treatment according to what has worked well with other patients who have suffered from the disease and who have similar attributes to me.

Ultimately, I am getting a feeling that I can turn this into something different. Perhaps I can use the situation in a positive way and be an inspiration to others. There’s no point in just going downhill with it, so I am slowly thinking that I could create a new reality around my predicament. One that would depend on my surviving this as best as possible, and showing the rest of the world that you can go through this and remain strong and positive, perhaps even overcome it. Apparently no one has beaten the particular cancer that I have, so why not try to reverse the statistics and make this into a first?”

Extraordinary! We can all agree that the drive to turn the experience of such a terrible illness into something positive for others, as Christina and Les have done, is the hallmark of someone truly heroic. When we think about the obstacles that we face in getting a fully digital NHS, and the potential pitfalls along the way, we need only think of Christina and Les, and the many patients like them who will benefit.

To conclude, effective use of digitisation in the NHS heralds the possibility of a complete transformation in how health services are delivered. This is one of those rare moments in human innovation when we could make a step change and deliver much more, for significantly less, on a permanent basis. We should, therefore, seize the opportunity with both hands, without delay.

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[Jo Churchill (Bury St Edmunds) (Con)]

It is a pleasure to serve under your chairmanship, Mr Wilson. I, too, congratulate my hon. Friend the Member for The Cotswolds (Geoffrey Clifton-Brown) on bringing this debate to the Chamber.

For me, data hold the key. As we move into new medical landscapes, comprehensive data sets hold vast possibilities for research and care, and we should harness and optimise their potential benefits, as my hon. Friend the Member for Twickenham (Dr Mathias) alluded to. I have been working with individuals, charities, researchers and clinicians to try to understand how to put patients at the centre of everything that is done with and for them.

Recent research by charities into patient responses shows that patients are keen for their data to be used. As my hon. Friend the Member for The Cotswolds mentioned, Data4Health was launched earlier this year. At its launch, we heard from a patient, Graham, whom my hon. Friend also mentioned. Graham was backed by a clinician, a researcher and a charity, and he spoke about his journey with leukaemia and how research had helped him get the most effective treatment. We also heard from the mother of the youngest patient to be diagnosed using cutting-edge genomics about how we are moving forward. What got those patients to a diagnosis and the correct care was a true understanding of their diseases. Data are a precious gift and we must take care to ensure that everything we do with them is in the patient’s best interest.

If we can speed up data sharing in something as simple as immunisation programmes, for example, it will be more effective. Vaccination coverage is necessary to ensure success, and at the moment data collection is, as a doctor described it to me, clunky in many areas. We still have paper records. Only recently we saw how integrated patient data might have saved a young child’s life. Patient safety and good data are therefore real and ever-present issues.

[Geoffrey Clifton-Brown]

My hon. Friend is extremely knowledgeable in this area. Is she aware of the campaign for the new-generation Bexsero meningitis B vaccine, which was developed by genomics? The NHS was the first health service in the world to allow two-month-old babies to receive that vaccine. The collection of data and the effectiveness of vaccines and drugs can put the NHS at the forefront of what is happening in the world.

[Jo Churchill]

Indeed, and there is a larger point than that: we also lead the world in life sciences, innovation and technology. The NHS is a critical resource; with patients’ permission, we have the ability not only to create great health for our nation, but to save money for our NHS and produce wealth for our economy. There is nothing not to like in that virtuous circle.

How much better would things be for people who go into hospital if the ambulance staff and paramedics who took them there could view their medication and understand their personal situation more fully, and therefore respond more appropriately and not waste precious time? As a doctor said to me, that is particularly important in caring for patients out of hours. Ringing other hospitals is sometimes not an option. Side effects can be worse for some patients than others, and we need to know why in order to target effective treatment. That would avoid waste and reduce the cost for individuals, their families and the system. My hon. Friend alluded to health economics studies that show potential savings ranging from as little as £16 billion to as much as £66 billion if data were deployed properly. We must grab this opportunity. The NHS needs to find cost savings, and we have an opportunity to drive the innovation that would deliver such savings.

That applies across the piece. I have just come from a debate on autism in the main Chamber, and one of the key points that was raised there was that health data are not adequate to link things up so that young children can have effective and timely diagnosis. As my hon. Friend mentioned, we had a powerful debate on meningitis in the House a few days ago, and we would benefit from data on that disease too. We also had a powerful and moving debate on brain tumours recently. Data on such issues should be linked, because the patient is an individual and how they respond to a drug or combinations of drugs is important.

Only this morning I spoke to Mike Burrows of the wonderful Salford lung study, in which a drug is put into a real-world environment and connected with databases so that all of a patient’s health needs can be tracked. The study looks at real life and can cope with all the different variables to see the effects that a drug might have on people. As we move into an environment in which co-morbidities are ever present in our ageing population, we can immediately see how someone who takes a drug for one condition and thereby receives a benefit for another will have their health enhanced.

GlaxoSmithKline is about to produce the results of that study, which will be interesting, but Mike said to me that it has been a winner for the local health service, and that is what is important. The GPs who have been involved have seen the benefits. The hardware alluded to by my hon. Friend the Member for Twickenham, which is so often lacking in the system, has been invested in and now, with the integration of the NHS and social care, we have the ability to optimise care for the patient, which is important. The Salford study covers a quarter of a million people, and the learning from it will be rolled out across the broader Manchester landscape as devolution takes place.

The Minister is in a unique position to see data as a solution. On many challenging issues in this data-rich system, we are information-poor. Variations lead to inconsistencies. He can implement the recommendations of the accelerated access review, spearheading how we can best put to use the lessons from large-scale studies such as the Salford study, the Birmingham study mentioned by my hon. Friend the Member for The Cotswolds and studies from right across London.

There is also much to be learned from some of the devolved areas. I have spoken at length about that with the hon. Member for Central Ayrshire (Dr Whitford), who is the Scottish National party’s lead on health. We have a lot of medical expertise to harness in my party and right across the House, so that we can concentrate minds and ensure that we take the right direction of travel.

Work is going on across the Richmond group and in the pharmaceutical industry. In this place, my hon. Friend the Member for Bath (Ben Howlett), who chairs the all-party group on rare, genetic and undiagnosed conditions, my hon. Friend the Member for North West Hampshire (Kit Malthouse), who chairs the all-party group on life sciences, and I, as chair of the all-party group on personalised medicine, are discussing how we can best develop a combined piece of work in this area, because collaborative approaches always give us the best results. There is a plethora of data in the system, but, as Chris Carrigan of the National Cancer Intelligence Network says, we must harness data effectively.

In this country we have some of the best science in the world. The areas of informatics and genomics will be game changers, allowing us to develop drugs in as little as five months instead of years. We need responsive systems. It is unlikely, if not impossible, that our clinicians will be able to keep up with cutting-edge research without the use of electronics. Last year, a multidisciplinary group looked at data sharing in genetics and concluded that the current arrangements are unsatisfactory.

If we understand why drugs work better on certain groups or in distinct geographical areas, they can be targeted effectively. That is particularly the case in the area of rare diseases. A young constituent of mine who has a condition called tuberous sclerosis and those who suffer from other conditions such as Duchenne muscular dystrophy, lupus or rare cancers are in cohorts that are too small to prove efficacy. If there are only a few suffers of such conditions throughout the country, the transferral of knowledge is difficult unless information is held centrally, but the data provide the key.

[Geoffrey Clifton-Brown]

I would not have intervened on my hon. Friend if we did not have plenty of time. She has developed the interesting theme of the benefit of the life sciences to our economy. She then explained how the better use of data can speed up the development of drugs. By doing that effectively at a time when global drugs companies are looking at where it is best to locate themselves, the NHS could encourage more of them to come to the United Kingdom to develop drugs. Would that not be a huge benefit?

[Jo Churchill]

It would. That is also part of the complex environment covered by the accelerated access review, the early access scheme that my hon. Friend mentioned and so on.

We now know what the landscape for the cancer drugs fund looks like going forward. I started my journey to this place on a personal note, speaking about personalised medicine as a campaigner back in 2010 after my second bout of cancer. My dream is that anybody will be able to have my data to learn what will prevent any of my four daughters from developing any of the cancers that I unfortunately have had in my lifetime. We need to take hold of patients’ ability to gift such data. Alongside that gift, we must drive an industry where we have the ability, the innovation, the technology and—quite frankly—the brains we need. Everybody comes here for our life sciences, to lead the world in that area, and we should grab that opportunity.

As I said, the cohorts are too small to prove efficacy. Unless we hold information in a central place, that creates a problem. As has been said, confidentiality is crucial. Strict safeguards and strong governance are a given, as my hon. Friend said. Confidentiality for participants involved in clinical research is well established, but most data are either aggregated or pseudonymised.

Speaking personally, if my data, particularly on cancer, can make one other person’s journey better than mine, it is a gift. I have spoken to Graham Silk about that, and he agrees, as do the many people I have campaigned with. As Christina and Les say, being the first to gift data makes someone feel that they have done something really special. Even if it gives someone with a complex disease to a small amount of additional time, we have given someone else a very special gift.

It is important that the risks are moderated, but we must also consider the benefits and what we can win. Many patient groups show involvement rates of getting on for 100% when people know that their information will go to others. My hon. Friend mentioned the cystic fibrosis group, which has an involvement rate of 98%. We need strong leadership to draw the strands together, a common understanding and a national agreement to optimise sharing in a safe, transparent and trustworthy way.

The risks and benefits of sharing data have to be explored, but those who talk only of the risks will miss the benefits. I would like to see a chief clinical informatics officer. I look to the Minister to lay out his vision for standardising, resourcing and futureproofing the system; drawing together the ongoing work; and achieving the momentum needed for greater data sharing to improve both the health and the wealth of our nation.

[Stephen Metcalfe (South Basildon and East Thurrock) (Con)]

It is a pleasure to speak in this debate, despite not thinking I would. I am actually a Parliamentary Private Secretary in the Department for Education, but I was asked to stand in this afternoon for the Minister, whose PPS could not be here. Suddenly I find myself for the first time ever keeping a holding pattern in advance of a Minister getting here. I suspect the confusion has arisen because the debate that was supposed to take place at 1.30 pm was cancelled, and this one was moved forward. I only discovered that this morning by spotting on the Order Paper that there was no debate other than this one. I suspect the Minister suffered the same problem.

[Geoffrey Clifton-Brown]

Given the way that my hon. Friend is handling his situation, I am sure it can only be a matter of time before he is elevated to ministerial status.

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[Stephen Metcalfe]

I thank my hon. Friend for those remarks; she is absolutely right. We have been talking about people suffering with rare conditions and about putting them together and spotting patterns, but tackling health inequality by comparing data from different parts of the country and by comparing, perhaps, people’s longer term histories is equally important. It may also help policy makers to find a way of developing a geographically stratified approach to tackling some of these health inequalities. Just moving on slightly, I think that part of why clinical commissioning groups were established was that they would allow doctors and clinicians locally to identify what was in the interests of the people they represented. Of course, using data to do that is vital, so I could not agree with my hon. Friend more.

[Geoffrey Clifton-Brown]

Before my hon. Friend moves away from the subject of healthcare, does he agree that we need to concentrate much more on preventive healthcare, rather than on the palliative treatment of health issues? Often early interventions, or even action taken to prevent a condition from occurring in the first place, can be far more effective for patients and more cost-effective for the NHS than treating symptoms once they have arisen.

[Stephen Metcalfe]

I agree completely. Prevention is always better. Sometimes we find that we have discovered the way of preventing something after it has been contracted—that may sound a bit confused. I am trying to say that if we have enough information in advance, we might be able to tell the right people how they might prevent themselves from getting a certain condition. We could identify them, identify the risk, inform them and hope that they do not then fall into the trap, as opposed to having found them with the condition and then saying, “If you had done this, you would have been able to prevent that particular condition.” My hon. Friend is absolutely right.

The wider benefits to the economy are the second, very important part of this. We have talked about the huge benefits and about making the United Kingdom—England— particularly with the fantastic NHS, the best place to develop, research, test and trial drugs, which has to be for the benefit of our constituents. If we have earlier access to new treatments, that can only be to the good. My hon. Friend used the excellent example of Cure Leukaemia in Birmingham and it sounds as though having that model rolled out across the country would be beneficial to many. I will certainly bring that particular aspect of my hon. Friend’s remarks to the Minister’s attention.

I shall start to wind up. We have to address a number of challenges to bring the ideas to fruition. When we talk about data, people get a little jittery. They think that we, as the authorities, are starting to collect information on them that they would not necessarily want collected, so the anonymising of data will be vital, as will ensuring that people understand how their data are used and how they can have access to their data and protect themselves.

[Geoffrey Clifton-Brown]

I emphasise to my hon. Friend that the most important thing that should come out of this debate is not the fact that data are a good thing—we all admit that—but that we need, from the Government, a way to push this forward. I and my hon. Friends have made a number of suggestions: there should be a public information campaign, common standards and perhaps a commissioner for data—or some such post—so that on a national basis we can really give this whole thing a push. Up till now, progress has been far too slow. We need to push things forward, so that we can really gain the benefits from it.

[Stephen Metcalfe]

My hon. Friend is completely correct; that is the key. It is about making sure that the Government put in place the correct mechanism not only to protect data but to give people confidence, and that is one of the biggest challenges that we face. I will make sure that is heard loud and clear.

The other big challenge is having the correct personnel to analyse the data. A major challenge for big data as a whole—not just in the clinical setting—is to have people who understand how the data work. Big data will be worth many billions of pounds to the UK economy over the next few years, and not just in the health sector, so we need to make sure that we have the right stream of well-trained, informed people coming through.

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[The Parliamentary Under-Secretary of State for Life Sciences (George Freeman)]

Thank you very much for making that point, Mr Wilson. It is a great pleasure to be here, and I am extremely disappointed not to have had notice that the debate had been brought forward. I am assiduous in attending these excellent debates in Westminster Hall, and on this subject more than any other. I will be having strong words with my office to ensure that I understand why the information was not communicated to me that the debate had been brought forward. I can only offer my apologies to hon. Members, all of whom know my passion for this subject. If there is any debate I would most want to have been at, it is this one, so please accept my apologies. I was alerted about six minutes ago that the debate had started, and I ran here. I cannot understand why this has happened, but I will happily look into it.

Thank you for the opportunity to respond to the debate, Mr Wilson. I start by congratulating the Backbench Business Committee on granting it and my hon. Friend the Member for The Cotswolds (Geoffrey Clifton-Brown) and the others who have spoken. I will say more in a minute about the points that they made, but it is incredibly timely to be having the debate now. I am grateful to the hon. Member for Bristol South (Karin Smyth) for her long list of questions, which I will do my best to plough through. If I miss anything, I will happily write to her to deal with it, particularly on one or two of the more detailed questions.

I genuinely thank my hon. Friend the Member for The Cotswolds for bringing this subject to the House. Although it perhaps is not a topic that is discussed down the Dog and Duck, many of the issues that it speaks to are discussed down the Dog and Duck—modern healthcare, research and the NHS’s role in helping to find new cures. My hon. Friend has been a doughty advocate of this subject in the House, not least in his advocacy of the Empower: Access to Medicine campaign on behalf of his late constituent, Les Halpin, who has been an inspirational figure to him and to many of us.

I also thank and pay tribute to my hon. Friend the Member for Bury St Edmunds (Jo Churchill), who has made a reputation very quickly in the House on the subject of medical research as a double cancer survivor herself and as a passionate advocate of how we can accelerate innovation in the NHS and harness the NHS as a catalyst for innovation and accelerated access to new treatments and drugs. My hon. Friend the Member for Twickenham (Dr Mathias) brings to the debate considerable professional expertise, as well as the passion with which she has spoken here this afternoon and elsewhere in the House.

The hon. Member for Bristol South gave a genuine signal of bipartisan, cross-party support for this broad agenda, which is extremely welcome. There are issues in the House on which it is entirely appropriate for the Government and the Opposition to knock seven bells out of each other. It is the Opposition’s job to oppose and ours to govern, and democracy would be ill served if we did not, but there are topics on which it is in the public interest that we seek agreement, and medical research is one of them. Indeed, in this Chamber on Monday of last week—it seems like a month ago—we had an incredibly packed debate, perhaps the most packed debate in Westminster Hall ever, on brain tumour research. The House was speaking with one voice, and I was delighted to be able to respond, surprise some and launch a working party to take forward the points that were made.

I thank the hon. Member for Bristol South for her signal of support in principle. That is heartfelt because this agenda—the use of data in a 21st-century health service to accelerate the search for cures and to prevent unnecessary suffering from tomorrow’s diseases and those that we do not have treatments for today—is precariously at risk from badly communicated policy and a media, public and political discourse that sometimes misses the detail of how data are actually being used. It is all too easy to jump on a bandwagon and launch a campaign to say, “No data to be used”. That would profoundly betray those who are suffering from disease today who want their experience to help to prevent disease tomorrow, and the pioneering clinicians, doctors, academics, researchers, charities and patients who have done so much to demonstrate the important role that data have to play in research. I therefore genuinely welcome the hon. Lady’s support in principle. I respect that that means she wants specific questions answered, and I will do my best to answer them.

I want to set the scene as to how and why the debate has come to a head, why the digitalisation of the health service and the use of data in health have become so topical, and why we have reflected that through the creation of this new ministerial role in the Department of Health. As the first Minister for Life Sciences, with responsibility for all of digital health and health data within the Department, I want to say something about the Government’s fundamental commitment to securing and safeguarding public trust and confidence as the bedrock of the digitalisation of the NHS. I will then say something about the commitments that we have made to that programme and the timetable and funding for it. I particularly want to pick up on the question of electronic health records, on which my hon. Friend the Member for The Cotswolds has rightly focused today’s debate, and how we see the electronic health record revolution in this Parliament and beyond transforming the three key pillars of the debate: individual care, system safety and performance, and research. When people ask why we need data, those three pillars are my first three answers.

I came to this agenda from the research end, after a 15-year career in biomedical research. In the past 15 years, the power of informatics—the power of applied computing—has come to transform how drugs are discovered. I am talking about individual data on the deep history of a patient’s journey through disease—their genomic predisposition, their clinical records and the way they react to different drugs—but also, on the other axis, about large-scale, anonymised cohort studies of patient experience. We can look, for example, at diabetes patients; why do 80% of UK diabetes patients respond in this way and not that way? A combination of large-scale, anonymised cohort studies and individual, in-depth personal patient histories can change, and indeed is changing, the way drugs are discovered.

I have seen with my own eyes in the industry how, in the last 10 years and even in the last five, work has very quickly come back to clinical assets and to starting the process of discovery with patients—with tissue, with data, with the clinical, human experience of disease. Understanding how different patients live with disease and respond to drugs is the starting point for research. The way the industry worked when I first joined it was that one would start with a theoretical, academic target for a possible drug and then go through an expensive 15-year process—it would now cost $2 billion—of long-term academic work followed by the pre-clinical stage and phase 1, 2, 3 and 4 trials, only to discover in about 80% of cases that the drug did not work in people. The industry is rapidly changing, to start with the experience of real people with real disease and to understand how disease takes hold in real people in real time.

One of the many benefits of this revolution is that we will reduce our dependence on animal tests. There will always be a need to involve animals in research, but we can reduce that need to an absolute minimum. The more we can start with data and an understanding of how particular patients respond, the more we can dramatically accelerate our search for both diagnostics and treatments.

As I said, I came to this agenda from the research end. Research has been significantly accelerated in this country over the past 20 or 30 years, for instance by the creation of the National Institute for Health Research and by the work of Professor Dame Sally Davies, the chief medical officer, in funding and setting up our clinical academic research centres. It is my great privilege to be the Minister responsible for that £1 billion-a-year infrastructure, and for the comprehensive biomedical centres that we have set up. For the past 15 to 20 years, there has been phenomenal use of data in tertiary research hospitals to drive research and improve care.

In many ways, the aim of the programme that I will discuss in a moment is to spread out the benefits of that advanced modern healthcare, and the embedding of research in clinical practice, to the rest of the national health service. For research purposes, the use of data is not an optional extra; it is an absolute fundamental. No researcher in the world would dream of trying to run a research programme without access to up-to-date data.

The programme is also about system safety and performance, and about individual care. If hon. Members have been to a GP clinic or a hospital recently, they will have quickly noticed that all the diagnostic devices and most pieces of treatment equipment are digital. Health is going digital. Conferences refer to digital health as if there were still analogue health, but health is going digital very fast, just like every other aspect of life. If the system is to give patients individual care, we have to digitalise it.

Any of us could, God forbid, clutch our chest, go down and need an ambulance. When the ambulance comes for me, I want the staff to have not a biro and a pad but an iPad. I want them to know my blood group, my allergies and my history when they get to me and when I go to A&E. Hon. Members might be amused that when I first gave a speech on this topic, I referred to a photograph outside my office in the Department of Health. It is an inspiring photograph of the NHS, there for us 24/7: a picture of a paramedic leaning out of an air ambulance over some remote island, probably in the Shetlands. A wave is breaking on the lighthouse, the poor patient lies in the heather waiting for the ambulance, and out of the air ambulance leans a paramedic holding a pad of paper and a biro. I said that when they come for me I want them to have an iPad, and the photograph was taken down within days of my speech, which was the first small sign of progress.

The important point is that we have set a target to ensure that electronic health records are used first in A&E, because that is where rapid response—getting the right drug to the patient—has the most dramatic effects. That is true across the care pathway. Most constituents say to me, “Mr Freeman, when I go from the GP to the hospital to the care home and back to the hospital, why do I have to repeat my diagnosis and my treatment history to the clinicians? Surely my patient record should follow, or even go ahead of me, through the system.” That point is very well made.

Most of my constituents desperately want individual care, so that the system knows who they or their loved ones are when they arrive. When somebody arrives at hospital after being referred by a GP, they want the hospital to know who they are, why they are there, what the referral was for and what the treatment is.

[Geoffrey Clifton-Brown]

The Minister has a huge knowledge of the subject, and I respect enormously what he is trying to do. One thing that has come out of the debate is that there is still a significant amount of public resistance to digitalising patient medical records. However, it is clearly in the interest of all of us. Those of us speaking in this debate are converted to the benefits of digital records. Will the Minister consider running a Government public information campaign showing the distinct benefits of digitalising patient medical records and how it can help the NHS? Will he also consider creating some form of post within Government to oversee the process—something like a health information commissioner—so that there is consistency right across the NHS as to how the digitalisation will be rolled out?

[George Freeman]

My hon. Friend makes an interesting point. I will come to our plans, and to the process and timetable for setting out the national data guardian’s recommendations on how we should proceed. I would expect that one of her recommendations will be about the importance of communicating to the public and patients why data are so important. As part of the annual National Institute for Health Research Parliament day that I launched, we might have a themed event focused on the power of data and why they are so key to a 21st century NHS.

--- Later in debate ---

[George Freeman]

Thank you, Mr Wilson. Having arrived a little late, I was taking the opportunity to deal with the points that my hon. Friends and the hon. Member for Bristol South have made. I will do my best to expedite matters for you.

I want to make the point that the covenanting of public trust and confidence is completely central for the Secretary of State and me. We want to make sure that the public have faith and confidence that we are not in any way playing fast and loose, and I hope that the measures I have announced will go some way to underpinning that.

We have also gone further. People have been concerned about the selling of their data for purposes beyond healthcare—commercial purposes—particularly those that may prejudice their eligibility for healthcare. We have not only made it clear that that is unacceptable; we have made it illegal and imposed a substantial fine and penalty on it. We need to use data but we need to use them appropriately, and we need patients and the public to know that that is our commitment.

On the commitments that we have made, we have secured funding from the Treasury for the completion of the paperless NHS 2020 project, which the Secretary of State has set out in other speeches in some detail. It is a £4.2 billion funding commitment, and in the past few months, since the completion of the comprehensive spending review, officials in the Department of Health, in NHS England and in the Health and Social Care Information Centre—which I recently announced is to be renamed NHS Digital—have been working on a complex work plan for seeing this through. It comprises 26 workstreams in six domains, and we are very committed to making sure that this is properly managed with clear milestones and clear accountability procedures. The project is complex and some things will not go according to plan. We need to make sure that we are on top of that and bringing the very best levels of management to that project.

I want to cite one or two examples of where we are profoundly leading in this space. One is a project for which I have ministerial responsibility—the 100,000 Genomes Project, in which we are sequencing the entire genomes of 100,000 volunteer NHS patients, and combining those with hospital data to form the world’s first reference library for genomic medicine. All the information is consented, and the project represents a pioneering showcase of the use of data in 21st-century health research. We have also launched a genomic medicine service in the NHS through the 13 genomic medicine centres. We want the NHS to pioneer genomic diagnosis and treatment, particularly in cancer and rare diseases. It is a shining informatic and digital data programme as well as a genetic science programme.

I also want to highlight a project that I recently saw, which goes to the other end of the spectrum: the day-to-day management of disease. It is a diabetes service pioneered, to my great joy, by Litcham surgery in my constituency. It involves patients self-monitoring their blood sugar levels, and barcode and digital transmission of that information back to the GP practice. I went to see it in use. Patients go to the consultation and the nurse comes with their data, which is used to monitor their precise condition. That leads to the use of the very latest drugs in ever-more accurate precision dosing and comparative data across all participating GP clinics, which drives up standards. It is a brilliant example of data being used to improve care and the use of novel and precision medicines in the NHS.

[Geoffrey Clifton-Brown]

I alluded to that in my speech. The next stage on from that is for the individual patient to be able to access the data themselves, which I do not think they can in the example that the Minister cited. I think there have been cases where patients have hacked into the data to get the information for themselves so that they can then see what is happening to their own body and adjust the amount of a particular drug—insulin or sugar or whatever it happens to be—without having to have recourse to a nurse or even a hospital.

[George Freeman]

My hon. Friend makes an interesting point, as did my hon. Friend the Member for Twickenham. As part of this quiet revolution of patient empowerment, the clinicians I speak to actively want their patients to have the data and are encouraging them to have it. This is where the apps revolution comes into play, because that is one of the ways in which we are putting this information in the hands, laptops and phones of patients. He is absolutely right that care is improved, but we want to improve patients’ understanding of their condition and improve patient empowerment.

The other example I want to cite is an inspiring example set up at King’s College London by Professor Simon Lovestone: the case register information system in mental health and psychiatry, which is a difficult area of research, as colleagues know. It puts together patient records from across the 250,000-patient catchment area of South London and Maudsley and combines them with MRI brain scans, the digitisation of patient medical records and very complex drug histories in mental health, to build the world’s first reference database for trying to understand the causal mechanisms for complex psychiatric disorders. It has attracted phenomenal industry co-investment alongside the NIHR centre of excellence and is a shining example of how we can use information and data to drive both research and improved care.

On electronic health records, which are important and which this debate was focused on, the ultimate goal is to have a system in which our individual health records flow seamlessly across the system in advance of patients. That is the goal of the paperless NHS. We have set out a series of specific commitments—I can write to the hon. Members here about them—for this year, next year, 2018, 2019 and 2020. They set out clear targets for how the electronic health record will be used and brought to bear—percentages of penetration in A&E, in the ambulance service and then mainstream across the service.

My hon. Friend the Member for The Cotswolds makes an important point. We need to identify some early uses of electronic health records, which may not be comprehensive and universal, and put this benefit in the hands of patients as quickly as possible. One of my missions is to ensure that we get some basic but powerful uses of electronic health records in iPads, phones and devices, so that patients can see their experience beginning to improve today.

--- Later in debate ---

[Geoffrey Clifton-Brown]

I am very grateful for the opportunity to discuss what has, as I anticipated, turned out to be an incredibly important subject. Clearly, digital records will be transformational in the NHS and will hugely benefit patients; they could enable the NHS to do much more for less and make possible the quicker development of more drugs, particularly for terminal and rare diseases. The effect could be that drug companies would want to remain here to develop and research their drugs—they would have an environment in which they could do that.

I believe—this is where I started in the debate—that some of what the Minister has told the House this afternoon reveals amazing progress in the NHS, which a public information campaign could show. I bet that very few people know that their local pharmacy could have full electronic access to their patient records, so that they could go in and say, “I’ve got this problem,” and the pharmacist could answer, “I am able to access your patient records if you give me your NHS number.” I assume that is how it works. The pharmacist could then look at the data and say, “You have been on a particular drug, and for your condition you should go and see your GP,” or, “There is another drug that would suit you better.” That sort of decision making would keep more patients out of their GP surgery and A&E and would have a distinct impact on the NHS, because it would reduce costs. The whole tenor of the debate has been to show that the NHS can be transformed by better data use—as the Minister’s Parliamentary Private Secretary, my hon. Friend the Member for South Basildon and East Thurrock (Stephen Metcalfe), said—by being able to store data properly and get access to them at a later date.

The Minister will know that I have come to this issue from Empower’s access to information campaign, and the idea of its being possible to use the data across a particular cohort of patients. I used the example of the Cystic Fibrosis Trust, 98% of whose patients are on a data record base. It can use the data to begin development of the drug for the next strain of cystic fibrosis. That is the ideal way in which the system should work.

I am grateful for the opportunity to speak. The debate will go on. Perhaps once the Caldicott report is published, and when the Government have set out how they may go about the public information campaign and the new Information Commissioner is in place, it would be appropriate for the House to have another, similar debate. That could perhaps be on a more mainstream day, when more Members could participate. The subject is so important that we should not leave it here.

Question put and agreed to.

Resolved,

That this House has considered use of digital records in the NHS.