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9 November 2010: E-Health Insider Live

  • Last modified date:
    18 April 2011

The way we collect, interpret, share and use data affects almost every aspect of our lives.  From the moment we wake each morning, practically everything we see, hear, touch, taste and smell has been produced, manufactured, bar-coded, shipped, tracked, monitored and sold to us all thanks to the efficient use of various forms of information.

It is this creative use of data and technology that enables great global companies to function with speed and efficiency and individual sole traders to run businesses that would once have taken a small army. 

But of course, access to vast amounts of information is no longer restricted to the realm of business.  Since that rather brilliant little thing called the internet exploded on the scene just 20 years ago, every single person in the world can, potentially, access more information than they could ever hope to use in a thousand lifetimes.  There are now 2.7 billion Google searches every single month.

This has changed us.  As ever more information is placed now quite literally in the palm of our hands, we have the potential to become ever more empowered citizens.  Not only can we look at product reviews on Amazon or find out what’s on at our local cinema. 

We can know what is going on anywhere in the world literally as it happens.  We can learn and understand our rights in a confusing world.  And we can know what our political leaders are doing in order to hold them to account. 

But access to information was just the start.  Fairly recently, the flow of information has changed.  We can now can join in.  The proliferation of sites like YouTube, Twitter and Wordpress have made information sharing just as important as information receiving.  Yes, there is a huge amount of drivel, idiocy and plain wrong-headedness online, but there are incredible things too. 

Sites like Twitter and YouTube have helped people in countries like Iran and Burma to exercise their rights to free assembly and free expression.  During last year’s Iranian elections, Twitter was used to help organise peaceful protests.

And here in the UK, a 15 year old boy, Rhys Morgan, has led a campaign against a so-called ‘miracle cure’ for Crohn’s Disease – literally an industrial bleach – that has not only seen online retailers in the UK shut down by Trading Standards but has led the World Health Organisation to send out an international alert to instruct authorities everywhere to follow suit.  All this from his bedroom in Wales.

But, again, there is more.  People and businesses were quick to see the potential to do more than just share information.  You can buy and sell.  You can compare and choose.  You can manage and organise an increasingly large part of your life online.  And once we make the change, it’s surprising how quickly we forget what life was like before. 

In just a few short years, we have gone from queuing up to see the bank manager to managing our finances online.  Rather than face the last minute crush, many of us will do our Christmas shopping from the comfort of our own homes.  And where we once used paper tickets to travel around London, now millions of people carry the convenience of an oyster card in their pocket.

In each case, we hand our personal information over to someone we cannot see, that we do not know, and yet we decide we can trust.  We judge that what we get in return – a better deal, more choice or greater convenience – is worth it.

There really is an information revolution.  But while successful businesses and individual people around the world embrace it, there in one sector that has so far failed to properly join in and reap the benefits...

Government. 

This is perhaps surprising considering the vast amount of data we collect and hold. 

Yet in so many instances, the information we collect in one place is incompatible with that stored in another.  Incredible insights made by one organisation fail to make it through to others.  And far more often than not, information is seen as an instrument for those on the inside to manage services, not as an enabling tool for those on the outside receiving them.  We are missing a very big trick.

Our Vision

In June, we published our White Paper, Equity and Excellence: liberating the NHS.  At it’s heart is a single aim – to achieve health outcomes that are among the best in the world.  We intend to achieve this with a simple, powerful idea - trust. 

We will strip out the unnecessary bureaucracy and process-driven targets that stifle the NHS and stop it from achieving its full potential.  Instead we will hand power over to NHS staff and to patients themselves to create a locally-led, clinically driven health service.

When the NHS first came into being, over 60 years ago, this would have been impossible.  But with the information revolution, it is not only possible, it is essential.
 
Last month we launched our consultation on our information strategy, An Information Revolution.  It is about transforming the way we access, control and use information in the NHS and adult social care services.

Information will be vital to driving better health, better care, better outcomes and greater efficiency.  It’s an essential part of our vision for “putting patients first”, giving people more choice, greater control and more shared decision-making between individuals and their care professionals.  If we give people the right information, in a way they can easily understand and use, they can take more responsibility for their own health and social care. 

Information technology is key to this.  We should be able to communicate with health and care professionals on-line, making care more convenient.  We should be able to get our test results digitally. 

We should look to maximise the potential of remote monitoring – making more use of telehealth and telecare – so we can deliver more effective care, more efficiently. 

We now even have the ability to imbed a chip within a patient to regularly monitor their condition, immediately alerting them and their doctor if something goes wrong.  Leaving them be if everything is OK.  No need for regular check-ups.  You see your doctor only as and when.

Importantly, patients should have far greater control of their own information.  We should all be able to see it and change it if we see errors in our medical records – making our care safer. 

We should be able to share in decision making with health and care professionals – there really should be “no decision about me, without me”. 

But control is more than access.  It’s more than being allowed to see what others have written about us.  Control is about deciding what happens to that information.  If we really control our own information, then we can choose to share it.  What if Cancer Research, instead of asking people to donate money, asked people to donate their data?  Would you do that?  I think a lot of people would. 

If we really control our own record, then we can add to it.  We can include our end of life or crisis plans, we can add any specific requirements we may have – wheelchair access or a vegetarian menu. 
If we really control, it goes beyond a mere record in a file.  It becomes a tool in our hands.

We also need to give more information to health and care professionals about the quality and efficiency of services.  We need to give them a clear picture of what else is out there, what other professionals are doing and the results they are achieving.  The sort of information that they can use to make their own services better and achieve our aim of health outcomes among the best in the world. 

None of this will happen without your help.  I know that there is a huge amount expertise and imagination out there.  The Health Service needs your knowledge and your ideas. 

What works?  What doesn’t work?  What ideas have gone before and what we can do better?  We can’t continue to take small steps.  It’s time for a giant leap.

But to do this, we face a number of challenges.

Information for everyone

First is making sure that this revolution benefits everyone.  I spoke at the beginning of the incredible exponential growth and impact of the internet.  Well, 10 million people in the UK have never used it.  We need to ensure the benefits reach everyone, including those 10 million.  It is a vision of greater openness, transparency and choice for everyone.  Not just for those with broadband and a laptop.

Often even when we have the information we need it is hard to understand and interpret.  We can be more innovative in the way we present information.  We need to tailor it to meet individual needs, for example for children or the elderly, for those with disabilities or hard to reach groups.  To make an analogy, we need to go from 1980s mobile the size of a brick to an iPhone – easy, intuitive, practical. 

3rd Parties

And we need to move away from the idea that it will be mainly the Government providing information on the quality of services.  Instead, we need a broad range of organisations able to offer it to a variety of audiences.  This requires greater openness. 

All NHS and adult social care organisations should offer the public and third parties the greatest possible access to the information they hold as soon as possible.  This includes the Health and Social Care Information Centre, which will collect and publish national data. 

The mass of anonymised data held by the NHS is an incredibly rich resource that could be far better mined if it were available to all. 

Publishing quickly will also enable greater public scrutiny and the scrutiny of a broad range of organisations interpreting and presenting the information in different ways for different audiences - even if the raw information isn’t completely polished. 

As of July, we already do this with infection data – updating infection rates by hospital for MRSA and c. dificile every week and placing it online for all to see.  This will be another driver of change.  For while this sort of information will enable informed personal choice, it will also lead to greater public scrutiny of health and social care, which will in turn lead to better services.

Trust

But while we will go to great lengths to publish aggregate data, the personal health information of individuals must be protected.  People should have access to their own information but the NHS and other organisations holding that information should keep it safe. 

The appalling memory of government databases lost in the post are still fresh in the mind and we will need to go to great lengths to reassure the public that their records are safe.  It is essential that we earn and keep the public’s trust. 

People also need to have confidence in the information provided by intermediaries.  We need to make it easy for new organisations, particularly smaller ones, to enter the market whilst ensuring that people can easily identify accurate, high quality information.  We’re consulting on this and are looking to work with interested parties to explore how we can ensure public trust in what they produce. 

We’re looking at things like voluntary accreditation schemes or industry-owned standards of good practice.  And because we don’t want to reinvent the wheel, we’ll also draw on existing models to ensure quality in information by making use of international standards.

Structured Data

As well as trusted sources, people need information that will genuinely lead to better outcomes.  We’re undertaking a fundamental review of NHS and adult social care data returns, with a public consultation next year.  This will help us to work out whether we are capturing the right sort of information.  This isn’t about collecting more data.  We don’t want to collect anything unless it is genuinely necessary and improves services. 

Our starting point is the data we already collect and seeing how we can use it more effectively.  Discarding what is redundant, adding only where there is real value.

There is so much data already in the system.  This isn’t the problem.  The problem is being able to take full advantage of it.  To do this, it needs to be properly structured. 

Imagine buying an airline ticket to New York.  You find the best deal, book your seat on a particular flight and check in, all online.  You’ll then print off your boarding pass or even have it on your phone.  But this data is not only the concern of the airline with whom you’re travelling. 

The same information needs to be shared with the airport, with security, it needs to be accessible by the police and security services, even with the authorities abroad.  None of this is possible if the data is not properly organised and structured across the whole organisational and supply chain.

This will be a huge challenge for the NHS, to structure its data.  But the potential rewards are huge.

A change in culture

Another challenge is that the information revolution requires a genuine change in culture.  More generally, we need to move away from the notion of patients and service users as passive recipients of care, to them being active participants in it. 
We need a similar cultural shift when it comes to information. 

Some may doubt the appetite of the general public to get involved.  But think of the number of reviews there are on Amazon or the number of blogs on every subject under the sun.  Think of the public’s hunger for news on health. 

There are often more pages in newspapers dedicated to health features than there are to the rest of the news put together.  And in the last year, people have made over 100 million visits to the NHS Choices website, rated by Which? as the best place on the web for medical information.  The demand is there.  The public are itching to share their opinions.  We just need to work out how to manage the flood.

For services to be truly patient led we need to listen to them.  We need a greater emphasis on patient generated information – on PROMs, the Patient-Reported Outcomes Measures, patient experience information, and feedback. 

But more than that, we need to have an ongoing dialogue with them.  You see this everywhere in the commercial world.  Companies increasingly use the internet as a way of engaging with their customers, inviting their feedback and ideas.  The good companies then respond to those ideas to improve how they work.  And good NHS organisations are starting to do this too.

Professor Paul Gringras  at Guy’s and St. Thomas’s and Dr Santosh at Great Ormond Street have developed HealthTracker – a simple and secure way of remotely monitoring young people with a range of conditions.  It uses questions, games and cartoons to measure symptoms and side-effects, moods and feelings. 

And patients aren’t tied to the hospital bed.  They use it online at home or at a local library.  This way, hospital consultants, parents, GPs and anyone else that needs to see how someone is doing has instant access to an incredibly high level of detail.

Another example is PatientView, developed by RIXG [Rick’s Gee], a UK group representing renal patients and professionals.  It gives renal patients information online about their diagnosis, their treatment and their latest test results. Patients can then share this with anyone they want and view it from anywhere in the world.

And because the information comes directly from the hospital databases, if a patient suspects a mistake, they can check with your own doctor.

Perhaps the most important source of data is the patient’s own care record, the data that’s recorded and updated as they progress through their treatment. 

When you visit your GP, you’ll see them typing up your notes while you’re there in the consulting room.  But elsewhere things can be very different.

Think of the inherent complexity of treating an individual patient.  Then multiply that complexity by a whole hospital ward and you start to see why it can be so difficult to keep a patient’s record 100% accurate.  Especially if there’s a gap between seeing a patient and writing up their notes. 

But what if a doctor could tap her lapel and record what they need to there and then?  Their voice could be translated into text and added instantly to the patient’s record?  Better data, less form filling, superior care.

All staff

The primary use of data should always be to improve outcomes for patients.  All staff need to understand this.  But they will also need to be supported to adopt up-to-date practices and use new technologies. 

This will not be easy for many and we need to be aware of the difficulties ahead.  We will work with regulatory bodies, professional organisations and non-clinical training bodies to improve the skills of staff. 
We need to imbed information and informatics skills into the workforce and into professional regulation.

This isn’t about turning nurses into IT professionals.  It’s about placing information at the centre of care in a way that people hardly even have to think about.  In a way that produces clear benefits and is not just seen as “another form to fill in”.

And within an environment of greater local autonomy and choice, IT professionals will become ever more influential.  Within a vibrant marketplace of suppliers, they will need to help develop local information strategies that underpin and support plans to improve the health of the local population. 

Taking this forward

We have set the direction with the White Paper.  But we need your ideas to shape the Information Strategy.  The strategy will be about putting the information revolution into effect, setting the goals and the timetable as well as examining the challenges.

Challenges such as how we get databases to talk to each other by using common standards.  We need common standards in terminology, in patient and care records, and in how we use an individual’s NHS number to link it all together.

This isn’t a case of a small group of experts deciding behind closed doors what is best for people, what’s best for the system.  It’s about creating an environment within which innovation and creativity can flourish. 

I mentioned the iPhone earlier.  If all it did was look good, make calls and send texts, few would have bought it.  The real value of the iPhone – what made it so remarkable – was that it wasn’t really about the ‘phone’ at all.  It was about the ‘App Store’.  It was the fact that companies large and small, even individuals with a bright idea and a basic understanding of programming, could get involved.  From a common set of standards came an explosion of innovation and creativity that has created a multi-billion dollar industry practically overnight.  This is what I want to see in the NHS.

No new money

We also need to look at how information can deliver benefits in the current financial climate.  Let me be straight with you - there is no new money for the information revolution.  It must pay for itself.  But there is huge potential for information to deliver real savings and we must make full use of that potential.

In the NHS and public services in general, we need to get away from the notion that you can’t do anything without ever increasing budgets. 

Hermann Hauser, the Cambridge-based founder of a number of successful computer companies, said “I gave my designers two advantages over Intel and other chip manufactures.  I gave them no money and I gave them no people.”  The result is the hugely influential chip designer ARM, whose chips will be powering the mobile phone of almost every single person in this room.

The NHS needs you!

Over the next few years, our reforms will change the NHS.  Pushing power away from Whitehall and down to doctors and nurses will mean that decisions are taken based purely on what is best for the patient, not on what is politically expedient for Ministers. 

Pushing power to patients will make them genuine partners in their own care and give them real power of scrutiny over their local NHS.

We have an unprecedented opportunity to improve the health of this country.  But to make it happen, we need to grasp it by the scruff of the neck.  And we will need your help. 

Information technology will play an ever-increasing role in our economic future.  As the Prime Minister set out earlier this month, we want Britain to become the destination of choice for bright ideas and new companies.  We in government have a role to play, but it is not picking winners or backing the biggest.  It is changing the law where it acts as a barrier to innovation.  It is encouraging, cajoling and influencing the change we want to see.  It is creating the best possible environment for innovation and success.  And we will do precisely the same thing in the NHS.

As Information professionals, you will have a greater role and higher profile within the Health Service.  You will be the in vanguard of this revolution, making information the lifeblood of the NHS. 
Our consultation, Liberating the NHS: An Information Revolution, sets out our broad vision and direction.  It sets out what we want to achieve, not how we are going to achieve it.  That is where the NHS needs you.

It needs you:

• to show us the opportunities we’ve missed,
• to help us make a difference to people quickly,
• to help drive a change in the culture, and
• to show us how information can deliver better outcomes.

We need your knowledge, we need your ideas and we need your enthusiasm to give people control of their own records, to encourage third parties into the market and to structure our data.

The information revolution has the potential to change everything.  But it can only do that if we all work together.   What will you do to make it happen?

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