Digital Records in the NHS

Stephen Metcalfe Excerpts

Thursday 28th April 2016 Westminster Hall

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

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

[Geoffrey Clifton-Brown]

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

--- Later in debate ---

[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.

[Geoffrey Clifton-Brown]

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

[Stephen Metcalfe]

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

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

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

[Geoffrey Clifton-Brown]

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

[Stephen Metcalfe]

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

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

[Dr Mathias]

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

[Stephen Metcalfe]

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 the Member for The Cotswolds (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 the Member for Twickenham (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.