Digital Records in the NHS

Jo Churchill Excerpts

Thursday 28th April 2016 Westminster Hall

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

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

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

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

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

[Geoffrey Clifton-Brown]

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

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[Jo Churchill]

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

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

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

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

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

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

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

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

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

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

[Geoffrey Clifton-Brown]

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

[Jo Churchill]

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

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

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

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

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

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

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[Stephen Metcalfe]

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.

[Jo Churchill]

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.

[Stephen Metcalfe]

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