Digital Records in the NHS

Karin Smyth 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.

--- Later in debate ---

[George Freeman]

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.

[Karin Smyth]

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?

[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.