Digital Records in the NHS — [Phil Wilson in the Chair]

Backbench Business – in Westminster Hall at 1:33 pm on 28th April 2016.

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Photo of Geoffrey Clifton-Brown Geoffrey Clifton-Brown Conservative, The Cotswolds 1:33 pm, 28th April 2016

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 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 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 it in whatever form they like; use it to inform their self-care; and feed it 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.

Photo of Tania Mathias Tania Mathias Conservative, Twickenham 1:55 pm, 28th April 2016

It is a pleasure to serve under your chairmanship, Mr Wilson.

I applaud my hon. Friend Geoffrey Clifton-Brown for securing this debate on an incredibly important topic. He has covered all the points that should be covered, and I just want to make a few comments from a personal point of a view, as a doctor and as an MP with a constituent who has dealt with this matter.

I was very struck by the story of Les Halpin, and I have always firmly believed that the NHS’s greatest resource is the patients. I believe in the patient expert, and that the patient expert should be top of the medical team. I agree that we need state-of-the-art IT in the NHS, although I will come to some practical concerns later. Synchronicity of appointments would be a dream—I believe that dreams can come true, so I am not saying that it is not possible. Co-ordination among services would be another, and I believe that, too, is possible to achieve in the NHS soon. Primarily, I support the idea of the patient controlling the data. I wish that more of that was in place right now, even before we have the required level of IT.

There are practical concerns for a clinician. Even as a medical student, when I was dealing with paper records, far too often I had to say to a patient—I think I have said it in every clinic I have ever worked in—“I’m sorry, I haven’t got your notes.” That is a waste of the clinician’s time and a family’s time. Whenever I gave patients a physical record of an appointment, they always produced that copy at the next appointment, even if it was a few months later or an annual check. That is why we have to take the lead from the patients.

We now have some digital records. In my field, ophthalmology, computerised records are great, but the IT can be a problem. The software is fine, but many units and hospitals do not have the hardware they need for the size of the graphic information on digital records. That is why state-of-the-art IT is a little bit of a dream at the moment.

My hon. Friend mentioned Les Halpin. I have a constituent who is the father of a little girl called Eleanor. She is part of a great charity, Eleanor’s Voice—google it, and see the tweets—and is a wonderful little girl. She is undergoing treatment for cancer, which requires many appointments at many different places. Her father is good with IT and realised that people often did not have the notes they needed and were not co-ordinated. As a patient expert—or rather, as a patient’s family member expert—he produced a Dropbox folder. If he goes to an appointment at a clinic with Eleanor now, taking her out of her little primary school, he can say, “Don’t worry, I’ve got everything on my Dropbox. I can give you my password.” Eleanor has therefore never had a clinical meeting in the NHS that has not been useful.

We must not underestimate the practical problems with this great goal. The NHS can lead, because having one health system that so many people can access is an amazing resource—nowhere else in the world has that. Let us put the patient first and learn from the patients.

Photo of Jo Churchill Jo Churchill Conservative, Bury St Edmunds 1:59 pm, 28th April 2016

It is a pleasure to serve under your chairmanship, Mr Wilson. I, too, congratulate my hon. Friend 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 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.

Photo of Geoffrey Clifton-Brown Geoffrey Clifton-Brown Conservative, The Cotswolds

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.

Photo of Jo Churchill Jo Churchill Conservative, Bury St Edmunds

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 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 Ben Howlett, who chairs the all-party group on rare, genetic and undiagnosed conditions, my hon. Friend 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.

Photo of Geoffrey Clifton-Brown Geoffrey Clifton-Brown Conservative, The Cotswolds

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?

Photo of Jo Churchill Jo Churchill Conservative, Bury St Edmunds

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.

Photo of Stephen Metcalfe Stephen Metcalfe Conservative, South Basildon and East Thurrock 2:12 pm, 28th April 2016

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.

Photo of Geoffrey Clifton-Brown Geoffrey Clifton-Brown Conservative, The Cotswolds

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.

Photo of Stephen Metcalfe Stephen Metcalfe Conservative, South Basildon and East Thurrock

My hon. Friend is very kind and generous, as always. I congratulate him on securing this important debate.

As I said, I am just sitting in for someone in the hope that at some point I might need to be released into the wild and they will cover for me. However, one thing I have found in my time in Parliament is that there is a huge crossover. One area in which I am very interested and actively involved in Parliament is science and technology. In the previous Parliament, I sat on the Select Committee on Science and Technology. In this Parliament, I chair the Parliamentary and Scientific Committee, which, for those who do not know—this is a bit of a plug for it—is the oldest all-party parliamentary group, established in 1939 to help with the war effort, to bring Parliament and science together and to look at things such as how we can improve the public’s health and food security and what we can do to improve our defences. It strikes me that we are talking about things I looked at when I was a member of the Science and Technology Committee, particularly the use of big data and the use of stratified and individual, personalised medicines. This has been quite an eye-opener for me, and I am grateful to my hon. Friend.

My hon. Friend is entirely right that huge amounts of data are now being generated across all services, especially the health service, with more and more advances in what we can test for and how data are stored. The effective use of IT is important not only in storing data—obviously, we must store data accurately and associate them with the correct patient records—but in making them accessible to others in future and in ensuring that their integrity is maintained. It will also allow clinicians who are perhaps viewing those data from a different angle and not fully understanding where they were collected to understand their use.

My hon. Friend spoke of his constituent, Les, who is an inspiration—I am sure that is why my hon. Friend used him as an example—and of the Empower Data4Health campaign to promote the better use of data, which would have wide benefits. The use of state-of-the-art IT and the analysis of data can be of huge benefit to the wider patient body. Data can be used to spot trends, patterns or crossover between certain circumstances, particularly in those with rare conditions. My hon. Friend brought that up in the case of Christina, who suffers from a rare cancer. She does not know why she is especially prone to that, but feels that by finding other sufferers, clinicians may be able to spot patterns and therefore be able to develop appropriate treatments or preventive measures.

It is only by examining huge databases for the smallest anomalies that we can start to have a real impact on people with such rare conditions. Where there is only a small sample of people, it is very difficult to put them together and analyse them as a whole, particularly with the barriers and the silo mentality that exist across many of our public health services. People are fearful of sharing data or do not even know that the data exist. Anything we can do to break that down, so that we can take a helicopter view—I think that is the current phrase—to see patterns must be good. The example that my hon. Friend gave showed what could be achieved through better use and analysis of data. On my behalf and the Minister’s—I have no authority to speak for the Minister; I am speaking entirely as a Back Bencher— I wish Christina well for the future.

As I have said, the future for individualised and stratified medicine is very bright, but it is only one part. That is why the data aspect is very important. Some think that the changes we will experience as a society in the next 30 years will be equal to those we have experienced as a society over the past 300 years, whether in transport, education, or the way we interact as nations. The greatest changes will probably be experienced in the healthcare system. I truly believe we are on the cusp of a major breakthrough, and the collection, analysis and use of data from a much wider base than has ever previously been available will play a huge part in that.

Photo of Jo Churchill Jo Churchill Conservative, Bury St Edmunds

I would like to say what a sterling job my hon. Friend is doing; I agree with everything I have heard so far. Does he agree that there is a big opportunity to drill down and understand more about health inequalities, which are so important in our society? When the average life expectancy in certain areas is so much more than in other areas, the use of collective data to drill down on health equalities and understand why things happen and the concomitant effect on certain diseases is really important.

Photo of Stephen Metcalfe Stephen Metcalfe Conservative, South Basildon and East Thurrock

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.

Photo of Geoffrey Clifton-Brown Geoffrey Clifton-Brown Conservative, The Cotswolds

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.

Photo of Stephen Metcalfe Stephen Metcalfe Conservative, South Basildon and East Thurrock

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.

Photo of Geoffrey Clifton-Brown Geoffrey Clifton-Brown Conservative, The Cotswolds

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.

Photo of Stephen Metcalfe Stephen Metcalfe Conservative, South Basildon and East Thurrock

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.

Photo of Tania Mathias Tania Mathias Conservative, Twickenham

On the point about the problems with big data, I concur with my hon. Friend Geoffrey Clifton-Brown. Our problem is that if we are not first in this, we will be the losers.

Photo of Stephen Metcalfe Stephen Metcalfe Conservative, South Basildon and East Thurrock

My hon. Friend is absolutely right: we have to be at the front of that race. One way to do that is by making sure that those who are currently in schools and colleges understand what big data are, what the benefits will be in the future and how they can have a productive, valuable and rewarding career, not just for themselves financially, but that makes a significant difference to us as a nation. The phrase “big data” slips off the tongue very easily but does not actually encompass everything that it means.

I have laid out some of the challenges and benefits. In summary—again, I am grateful for you allowing me to speak in this debate, Mr Wilson—it is obvious that the full digitisation of records will potentially solve some of the biggest problems and challenges we face in spotting patterns and helping to develop new treatments and therapies. It will help to improve patient safety and, as my hon. Friend Geoffrey Clifton-Brown said, patient-focused care, by putting the patient right at the centre again.

Of course, cost savings are available, and they are always required in these difficult times. Good IT can lead to good cost savings. The right way forward has to be accuracy and the accurate keeping of records, stopping doubling-up and making sure that records are in the right place at the right time for the right patient. My hon. Friend Dr Mathias gave an excellent example of a patient who had taken control of their records via—I think—Dropbox, which meant that for every appointment the patient had access to everything that was needed to make it a productive and valuable experience. That is very positive and I am sure that, as Members, we have all had reports from constituents who say that they had a wasted experience at their local doctor’s because the right records were not there. If that one small aspect is dealt with, that has to be welcome.

Finally, my hon. Friend the Member for The Cotswolds made the point that with this move we will—and should—be able to achieve more for less, and that is always welcome. I congratulate him on securing this debate and thank my hon. Friends the Members for Twickenham and for Bury St Edmunds (Jo Churchill) for their contributions. I very much look forward to hearing what the Opposition spokesman has to say and, in due course, the Minister.

Photo of Karin Smyth Karin Smyth Labour, Bristol South 2:29 pm, 28th April 2016

It is a pleasure to serve under your chairmanship, Mr Wilson. I congratulate Geoffrey Clifton-Brown on securing this important debate and I thank the Backbench Business Committee for granting it. It has been interesting. I am a new Member of this House and it is true and a great pleasure that every day brings new insight into the working of the House and its rules and procedures. I am grateful to have seen some of that today.

We have heard some valuable contributions. Dr Mathias used her practical experience as a clinician to talk about patient control data and her dream, which I share, of co-ordination on behalf of her constituents. Jo Churchill emphasised the value of research and the role of charities and other non-NHS bodies in driving this agenda forward and having the time to understand diseases. I was particularly glad to hear her mention health economics in this sort of work.

Stephen Metcalfe heroically used his experience of large data in another Department and I look forward to his accelerated political career through the Government ranks. The perspectives of all hon. Members have enriched this debate not just today, but previously. Let us hope that we can move the discussion on digital health records forward for the benefit of patients across the country.

This subject is dear to the heart of the hon. Member for The Cotswolds. He talked about his constituent’s experience and referred to four ways in which the digitisation of data can be transformational for the health service by speeding up new developments, improving co-ordination of care, giving patients control over information about their health and driving whole processes forward. He has been a powerful advocate for his constituents. I often say that patients are assets to be utilised for their knowledge and experience, not nuisances to be ignored. The potential for people to look for hope, not just for themselves but using their experience for others, is an inspiration and at the heart of much of this debate.

I want to talk about the benefits of the data. This debate is important because the NHS, which provides a large population with universal coverage that is free at the point of use, is uniquely placed to be a world leader in innovation.

I started my career as an NHS manager in 1988 without access to a computer and finished as a manager of a patient referral service, so I know how far we have come but also how far we need to go. The NHS must be one of the last remaining organisations that still communicate with people via letter. Extending the use of technology to patient records is not just about using taxpayers’ money more effectively, important though that is. The effective use of the right data has huge benefits as yet unseen and unknown, such as how such data can be used to help tackle inequalities, particularly health inequalities?

With a growing and ageing population, more and more people are living with different combinations of illnesses and conditions. None of us here knows the huge potential healthcare benefits that the wise use of data could bring to the population we serve in years to come. The principles of the Government’s proposals are worthy of our support. As members of the party that founded and nurtured the NHS, we want to find ways of delivering high-quality, personalised and cost-effective care. I assure the Minister that we will support in principle the Government’s plans to roll the agenda forward, as long as there is scrutiny and challenge in a number of areas.

As with everything, there is a vital balance to be struck, particularly on privacy, protection and penalties for the misuse of data, which the hon. Member for The Cotswolds highlighted. I hope the Minister will agree that public confidence in the integrity of the programme is pivotal to its success. I also hope he will assure us today that the Government will take on board important lessons from the shambles surrounding the roll-out of care.data. At the heart of that was lack of public trust about possible misuse of data and a perception that the Government were trying to make changes on the quiet. This must not happen again. I agree with the hon. Member for The Cotswolds that we need a public information campaign that brings patients with us on this journey.

The efficient and effective use of data and technology plays an increasing role in many areas of our lives. The public, perhaps rightly, expect the NHS to catch up and to make for an easier and better-quality patient experience. It can be hard to convince a sceptical public and worried patients that sharing data about their health conditions and treatment will benefit them and their families.

Examples from years past can help and we have heard some powerful examples today. Data played a vital role in tracking and establishing a link between smoking and lung cancer. As a result, earlier diagnosis and swifter treatments were made possible. I am sure that people who have felt the frustration of putting themselves under the care of healthcare professionals who, for whatever reason, have not had access to their health records and so are not always best placed to move treatment forward can be readily convinced of the programme’s benefits.

In my city of Bristol, GPs collaborate on a web-based platform with well-established sharing agreements for data that includes community providers. There is good practice across the country. Bristol is a high-tech, savvy digital city, but I have learned during my time in this place that many hon. Members have constituencies that do not even have good broadband coverage. If this project helps to bring the benefits of shared platforms to people nationwide, it will be a good thing, but it will require a lot of work. If patients can be helped to understand the interoperability of patient data, that promises to improve the quality of experience for the patient, and the programme will receive widespread public support.

I hope the Minister will be able to explain what plans the Government have to educate the public at large about the benefits of this important project, to ensure that concerns that are bound to be expressed by some about privacy and security are tackled before they can multiply. There will be concern that such a major programme of digitisation with an ambitious timeline could run into glitches of the type that many governmental IT projects across different types of government have suffered in the past. What degree of confidence does the Minister have in the deliverability of the timeline and the budget overview? What guarantee can he give that it will be met and who can the taxpayer hold to account if it is not? What confidence does the Minister have in the safeguards that will be put in place to ensure the credibility of confidential data? Is he confident that the requirements of the National Data Guardian will be met?

I now want to turn to a few other concerns that I hope the Minster will address this afternoon, first about money. I have mentioned taxpayer value, as have other hon. Members, so let me turn to some elements of the financial side of this project. Like other hon. Members, I have seen the headlines proclaiming the additional money that is supposedly being allocated to these projects as part of the “General Practice Forward View”, but with the Department of Health struggling to remain within its expenditure limit, 80% of trusts in deficit and the well-documented pressures on primary care, will the Minister be crystal clear, not just about the money allocation he will want to tell us about but, crucially, what pot or pots it will come from and how it will be allocated to support this work?

The Secretary of State has referred to the so-called extra investment of £45 million being dependent on uptake. Will he outline how he sees this dependency shaping up over the coming years? If digitisation of medical records is about improving patient health and genuinely bringing healthcare into the 21st century and speeding up patient care, it will be worthy of support, but we do need to know how it will be implemented.

There are serious questions about capacity and ability to deliver, not just the capacity of the Department of Health and NHS England but, crucially, the capacity of GP surgeries and other providers to deliver a credible digitised service. How will GP practices, which are already hard-pressed by soaring patient demand, be supported to implement this project? What level of engagement in the process to shape the roll-out can GP practices expect? If the Government are keen to limit piling additional pressure on busy GPs, how will they ensure that digitisation processes do not simply add to the burdens? I look forward to reassurance from the Minister to take back to GPs in my constituency, and for colleagues to take back to theirs, because I know that the latest announcements will, with other pressures, bear heavily on their current and projected workload.

Finally, I turn to accountability, which was of concern in my professional experience during the structural changes of 2010-2015. The source of responsibility for change and delivery remains a concern to me and others and is a problem that permeates many aspects of our healthcare system. Throughout the digitisation programme, who will be accountable for its delivery? In the realigned structures of the NHS, we are well used to having difficulty navigating a complex web of accountability for various elements of various programmes. When it comes to patient data, Governments of all persuasions do not have a glowing track record. I suspect that if this project goes to plan, the Minister will claim credit, but if it goes wrong, who will carry the can?

I again thank the Backbench Business Committee for granting this important debate. I hope this will be the start of many more discussions with hon. Members on both sides of the House about this very important issue.

Photo of Phil Wilson Phil Wilson Labour, Sedgefield

Before I call the Minister, let me say that I am really disappointed that he could not be here from the start of the debate. I know that the agenda for this afternoon was changed, but that was on the Order Paper; it was known. I am sure that the change would also have been communicated to the Department, in ample time for this afternoon’s debate. Bearing that in mind, I call the Minister to respond to the debate.

Photo of George Freeman George Freeman The Parliamentary Under-Secretary of State for Business, Innovation and Skills, The Parliamentary Under-Secretary of State for Health 2:40 pm, 28th April 2016

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 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 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 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 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 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.

Photo of Geoffrey Clifton-Brown Geoffrey Clifton-Brown Conservative, The Cotswolds

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?

Photo of George Freeman George Freeman The Parliamentary Under-Secretary of State for Business, Innovation and Skills, The Parliamentary Under-Secretary of State for Health

My hon. Friend makes an interesting point. I will come 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.

Photo of Tania Mathias Tania Mathias Conservative, Twickenham

We have been talking about the speed with which the Government should be digitalising records, hence the idea of a chief of information for the NHS. I believe that the public are already ahead of the Government. That is the problem—I fear that the Government may already be too late. There are too many apps out there, too many different clinicians are doing different things and too many patients are devising their own systems. We are behind everybody else.

Photo of George Freeman George Freeman The Parliamentary Under-Secretary of State for Business, Innovation and Skills, The Parliamentary Under-Secretary of State for Health

My hon. Friend makes an excellent point. She knows my frustrations with the situation, and the truth is that healthcare is digitalising very fast. That is not just driven by commercial app manufacturers. As she says, many doctors are developing apps for their own benefit and that of their patients. Many patients are also developing apps. The revolution is coming. Part of our strategy is to ensure the digitalisation of the NHS, which is no mean undertaking. In fact, I would liken it to Crossrail and HS2 as a global project. It is the digitalisation of the world’s fifth biggest employer—a vast undertaking. There are a number of lessons to be learned from previous Government initiatives.

In many ways, we are catching up. The challenge is to catch up in a way that understands the pace at which healthcare is digitalising and seeks not to monopolise, but to provide an aircraft carrier—a mother ship—on which the exploding range of various digital healthcare products can land. I have mixed my metaphors in an ugly way there, but the challenge is to turn the NHS into a catalyst for leading and unlocking NHS leadership in digitalisation.

I totally accept the point made by my hon. Friend the Member for Twickenham that, in many ways, we are catching up and trying to provide a platform for leadership in a rapidly emerging space. In response to the point that she and my hon. Friend the Member for The Cotswolds made about the need for leadership in the NHS, I can confirm that NHS England is about to appoint a chief information technology officer. A major part of that function will be to be lead champion, to explain and to be a point of patient information in the NHS.

Through the creation of my role, we have for the first time created a single ministerial portfolio with responsibility for this area. Until the post was created, every Minister in the Department had a little bit of information and digitalisation in their portfolio, which in many ways was appropriate but also meant that there was no single point of leadership. Part of my mission is to ensure that the Department brings that together.

The three great pillars that require the quiet revolution of digitalisation include research and individual care. However, I want to touch on the third pillar, which is system safety and performance. The NHS is the fifth biggest employer in the world. It is an incredible public service and an incredibly complex set of organisations. We talk of it as if it were one, but under the national health service’s magnificent initials are a whole range of GPs, hospitals and care providers, which all operate independently within a healthcare system. We are building the railway tracks for patients’ records to move along, so that we integrate them. A fundamental part of that, in addition to research and individual care, is ensuring that the NHS can deliver an essential contract with patients in a 21st century health system. We have a duty to know where best practice is and where worst practice is. We should not have to rely on whistleblowers to put themselves at huge personal risk by sighting and highlighting worst practice. The computer will do it for us.

The other day, I looked at a piece of software that was developed—for a very small amount of money, by the way—by an Oxford academic. It shows prescribing data for one important class of drugs across the whole of NHS England. There is one outlier, and it happens to be in Norfolk, which is why I took a particular interest. It is clear that there is a very small group of GPs that somebody has not got the guidance to or rung up. I am sure that as soon as those GPs have the information, their prescribing practice will fall into line with the rest of the country.

That is computing power being used to promote patient safety and efficiency. The third pillar—system safety and performance—is important, and one of the lessons from the Francis report is that we need to use data much better to identify best and worst practice. When people ask why we are doing this, I suggest that it is for those three noble purposes, which support each other. The digitisation of the system should drive patient care, system safety and research, and the same datasets run between them.

Crucially, the Secretary of State and I understand that the whole digitisation programme has to be rooted and covenanted in deep and profound respect for public and patient trust and confidence. I am not revealing a state secret by saying that I am not sure that that has necessarily been the case until now, for a whole range of reasons, but partly because Government have seen digitisation as inevitable and, as my hon. Friend the Member for Twickenham suggests, slightly overdue, and therefore not something that needs to be announced. Of course, the Government are always coy about admitting problems, but I am not coy about saying to people that we are still running the NHS, in large part, on paper and cardboard, which is a problem that needs to be solved.

Unless we describe the problem clearly, we will not carry the public with us in solving it. My magnificent local hospital, the Norfolk and Norwich, has a data repository with 10 miles of shelving on which patient records are kept, held together by treasury tags and paperclips. I do not know about other Members, but I am not prepared to say to my constituents that that is an appropriate way to store their information and, indeed, my information, my mother’s information and my children’s information. Each hospital separately stores records of which patients came to it and when, which does not speak to a properly joined-up system. It is a national health service—the clue is in the name—and when someone clutches their chest in an unfamiliar bit of the country, they expect the national health service to know who they are. That is one of the benefits of a national health service. From the point of view of properly integrating, we need to explain to people where the current system is not able to deliver.

It is for that reason, and because we want to carry public trust and confidence, that the Secretary of State and I are shifting from what I crudely characterise as an agenda that, to the extent that it has been discussed publicly, has been called long overdue, essential for the running of the system, and something that patients do not need to worry too much about. Well, we only have to say the words “big data” and “big government” to most people in this country for them to be alert to the risks of what might be happening behind their back. I am trying to do it differently by saying to people “This is an urgent, overdue, phenomenally exciting and complex project that we are doing in the interests of patients,” for the reasons I have just set out. Public trust and confidence are essential to the project, and I am not revealing any state secrets by saying that NHS England’s care.data consultation last year did not demonstrate global best practice in consulting patients. It was a well-intentioned leaflet that was sent to every house, which of course does not mean that every person in the country read it, and for many people the wording was as confusing as it was enlightening. That is one of the reasons why the Secretary of State and I have gone to such lengths.

We have appointed the first ever national data guardian in Dame Fiona Caldicott, a widely respected expert in the field, to advise us on the right protocols and safeguards for ensuring that public and patients can have trust and confidence in the system. Dame Fiona has carried out an extraordinarily detailed piece of work, and her recommendations will be landing on our desks imminently. She has considered the whole range of issues, including consent; how many data should naturally flow in the system for it to function; which data transactions should be subject to additional patient consent; what the standards should be; and what the relationship between the various bodies should be in terms of accountability. That work is very important.

We have gone further and asked the Care Quality Commission to carry out a major piece of work on best practice in the system today and to set a benchmark so that we can hold the system to account. We have set up the digital maturity index, and this spring each clinical commissioning group has had to report, for the first time, on the level of digitisation in its local health economy, and we are building that into the CCG annual assessment framework so that people will be able to click on My NHS and see heat maps of the extent of digitisation across the country, which will help us to identify best and worst practice and to accelerate the roll-out.

We have also appointed Professor Bob Wachter, the American digital health expert, to come over and help us consider the cultural issues of ensuring that the NHS is properly training and supporting practitioners. It is about the human element, because we can have as many systems and technologies as we want, but it ultimately comes down to culture, practice and patients’ records being respected and treated appropriately by the system. I hope Members can see that we are taking seriously the need to put in place a series of measures that carry public trust and confidence.

Photo of Tania Mathias Tania Mathias Conservative, Twickenham

Will the Minister ensure that there is a two-way exchange of information and transparency so that, if the NHS has my medical data, I am always offered, in a secure form such as a personal Dropbox, or whatever form I wish, everything that the NHS has on me? Every patient must be offered all the data that the NHS has on him or her.

Photo of George Freeman George Freeman The Parliamentary Under-Secretary of State for Business, Innovation and Skills, The Parliamentary Under-Secretary of State for Health

Unsurprisingly, my hon. Friend makes an excellent point. She will know that my first parliamentary foray into this space was by championing a ten-minute rule Bill on patients’ rights to patient data. Like her, I believe that, in addition to the three noble pillars I set out, there is a fourth pillar. Not only does the digitisation of health have benefits for the system in delivering healthcare in a safer, higher quality and better way but, almost more importantly, it helps the transition of healthcare from something that, in the 20th century, was essentially done to patients by a largely benign health state—an essentially passive model of “Come to us when you are sick, and we will treat you as best we can. You can then return to normality”—to a model of healthcare for the 21st century that is all about empowering active healthcare citizenship by modern citizens. We give them the information, and we allow them to understand and take control of their health and life choices, not in a punitive way or in a way that says, “If you don’t, or if you are irresponsible, you will be ineligible,” but in a way that tries to inspire and promote a culture of active healthcare citizenship.

Putting information in the power of patients and their loved ones, in the same way as in banking and in all other important aspects of our lives, will pay huge public health benefits, with people using information and data to drive lifestyle choices. Indeed, Members are already seeing that. One of the ironies of this space is that some of the most rapid digitisation driven by patients is by the so-called “worried well”—those who take their healthcare seriously and are using Fitbits and other devices to monitor calorie intake, exercise and sleeping patterns to keep themselves out of hospital. The system should use those technologies to try to deliver better care, and we want to integrate the two so that more and more patients are able to harness such technologies to empower themselves. Ultimately, the Secretary of State and I want to get to a point where that transparency and empowerment drives the relationship with healthcare recipients, as healthcare citizens, choosing where to have their surgery and holding the system to account. Intelligent digital transparency is the greatest driver of a modern healthcare system so that every day, every hour and every week the massive diagnostic and treatment footprint of the NHS is mapped digitally, allowing patients to know that they are actually controlling the system, which is there for them.

Some clinicians, particularly GPs, take a different view—that the sovereignty of their relationship with their patient means that their patient’s data belong to the clinician, which is an interesting point. Most patients feel that their data belong to them and that they should have access to their data. There are ethical issues, as well as the question of the appropriate relationship between clinician and patient, and in no way do I want technology to get in the way of, or to undermine, that sovereignty. Indeed, the clinicians to whom I speak say that the digitisation revolution allows them to focus their professionalism and judgment on what really brought them into clinical practice, which is dealing with their patients, while the computer does what they no longer have to do—recording and accessing in a split-second all the information the clinician needs to make their judgments. Technology can support that relationship, rather than undermining it.

Photo of Tania Mathias Tania Mathias Conservative, Twickenham

In defence of the clinicians out there, I am sure the majority believe that the patients they serve are sovereign.

Photo of Phil Wilson Phil Wilson Labour, Sedgefield

Minister, before you respond, may I say that you have been on your feet now for 30 minutes and the Minister’s response is usually about 10 minutes? I just want you to bear that in mind.

Photo of George Freeman George Freeman The Parliamentary Under-Secretary of State for Business, Innovation and Skills, The Parliamentary Under-Secretary of State for Health

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.

Photo of Geoffrey Clifton-Brown Geoffrey Clifton-Brown Conservative, The Cotswolds

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.

Photo of George Freeman George Freeman The Parliamentary Under-Secretary of State for Business, Innovation and Skills, The Parliamentary Under-Secretary of State for Health

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.

Photo of Karin Smyth Karin Smyth Labour, Bristol South

I appreciate the Minister’s enthusiasm and his great knowledge of this sphere. He is probably one of the people who has benefited in his career from the Labour Government’s reversal of the brain drain in the 1980s and 1990s, when they invested heavily in research and technology in the great institutions that he has talked about, which has led us to this point. I look forward to the timeline. He has highlighted how we have Dame Fiona Caldicott, the CQC and—forgive me; I missed the name of the gentleman from America—the practitioner who is coming to talk to us about the culture of patient data. We have CCGs reporting into NHS England and NHS England’s capability on the ground to deliver and support providers to make this deliverable. I do not wish to make a party political point on that, but the frustration shared by those of us who understand how those systems work on the ground will not be helped by having a plurality of people. Who will be in charge of the work plan with its 26 workstreams to make this happen?

Photo of George Freeman George Freeman The Parliamentary Under-Secretary of State for Business, Innovation and Skills, The Parliamentary Under-Secretary of State for Health

The hon. Lady makes an important point. It is being driven by the National Information Board, which is NHS-led and involves all the key stakeholders within the service. It is a shining example. I recently spoke at its annual conference, and NHS clinicians will tell you that they are setting the protocols and programmes through the NIB. I genuinely do not believe that the establishment of Dame Fiona Caldicott and the CQC and Wachter reviews are distractions. They are intended to try to support clinical pioneers in the service.

I understand the point that the hon. Lady makes about the service being under pressure, which it is. The demand for healthcare is exploding, and NHS England has set out in the “Five Year Forward View” that digitisation and the greater use of technology is essential to reducing unnecessary pressure on the system. It has forecast that in 2020 we will be looking at £22 billion of avoidable costs from hospital admissions, from bureaucracy, and from paperwork. How many of us have had a diagnosis and received three or four, sometimes five, letters all saying slightly different things? That is incredibly wasteful and expensive.

NHS England itself has identified the fact that if that technology is properly implemented it can play a part in driving efficiency. However, I do not underestimate the extent to which that requires investment—which is why we have front-loaded it—as well as capacity and the ability to integrate. That is a challenge. When those systems are put in place in the private sector, huge numbers of people and huge amounts of resources are devoted to driving the integration properly. I would expect Dame Fiona’s review to touch on that, particularly in relation to training, and organisations’ culture and capacity.

However, things are happening. I want to share the data. More than 55 million people in England now have a summary care record. That is 96% of the population. As to how many are aware of that, it is an excellent question. How many of us have obtained access to our summary care record? That is important. Eighty-five per cent. of NHS 111 services, 73% of ambulance trusts and 63% of A&E departments now use the summary care record, and by April next year more than 95% of pharmacies will have access to it. By 2018 clinicians in primary care, urgent and emergency care, and other key transitions of care context will operate without paper, using the summary care record.

Several colleagues have touched on the question of apps today. We have clearly set out, through the National Information Board, a commitment to ensure that there are high-quality appointment-booking apps, with access to full medical records, from this year. NHS England and NHS Digital are working with GP system suppliers and third party app developers.

Photo of Phil Wilson Phil Wilson Labour, Sedgefield

Order. May I just respectfully say to the Minister, you have now spoken longer than the Member who moved the motion for the debate. You turned up an hour late and have now spoken for 40 minutes. I just want you to bear that in mind. The debate does go on to 4.30, but I respectfully point out that Ministers who have been present for the full debate usually speak for just 10 minutes. Hopefully you will bear that in mind, and are reaching the end of the speech.

Photo of George Freeman George Freeman The Parliamentary Under-Secretary of State for Business, Innovation and Skills, The Parliamentary Under-Secretary of State for Health

I was trying to signal my respect for the questions that have been raised by giving comprehensive answers, but I will try to wrap up.

There is a major programme of work on apps, led by the NIB. That is to create a framework in which approved apps can be launched on the NHS Digital system. They need to be approved, so that patients have trust and confidence that they are verifiable and appropriate and can fulfil the claims they make. Ultimately we see NHS Digital as a major platform for sponsoring and developing those apps. We are not alone in that. There are stunning international examples. Estonia launched its electronic health record in 2009 and it is worth having a look at what it is doing. The US Veterans Association provides an integrated in-patient and out-patient electronic health record for VA patients. I will be in Washington in 10 days to look at that system again. Denmark is doing some extraordinary work, with more than 45% of patients now contacting their GPs digitally and using digital technology.

In accordance with your strictures, Mr Wilson, I will cease to set out the Government’s programme. I shall happily write to all those who attended the debate—particularly in response to the questions raised just now by the hon. Member for Bristol South about GP funding and what streams funding is coming through, as well as any other questions that I have not had the chance to answer. Once again I apologise for being late; I had no idea that the timing of the debate had changed. I hope that I have addressed the points that were made.

Photo of Geoffrey Clifton-Brown Geoffrey Clifton-Brown Conservative, The Cotswolds 3:23 pm, 28th April 2016

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 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.

Sitting adjourned.