Digital Records in the NHS

Phil Wilson Excerpts

Thursday 28th April 2016 Westminster Hall

[Karin Smyth (Bristol South) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Wilson. I congratulate the hon. Member for The Cotswolds (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. The hon. Member for Twickenham (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. The hon. Member for Bury St Edmunds (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.

The hon. Member for South Basildon and East Thurrock (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.

[Phil Wilson (in the Chair)]

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.

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[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.

[George Freeman]

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

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

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

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

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

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

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[George Freeman]

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.

[Phil Wilson (in the Chair)]

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.

[George Freeman]

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.