Digital Records in the NHS

Tania Mathias Excerpts

Thursday 28th April 2016 Westminster Hall

[Dr Tania Mathias (Twickenham) (Con)]

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

I applaud my hon. Friend the Member for The Cotswolds (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.

--- Later in debate ---

[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.

--- Later in debate ---

[George Freeman]

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

[Dr Mathias]

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.

[George Freeman]

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.

[Dr Mathias]

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.

[George Freeman]

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.

[Dr Mathias]

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

[Phil Wilson (in the Chair)]

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.