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5 April 2011: British Computing Society - ‘No decision about me, without me: Information and Empowerment’

  • Last modified date:
    8 April 2011

Andrew Lansley, Secretary of State for Health, speaks at HC2011, a conference for health and social care informaticians, ICT professionals and clinicians.

 

Thank you Matthew [Swindells, Chair, BCS], Jim [Norton, President, BCS].

I’d like to start by welcoming the work done by the BCS on the Information Revolution agenda.

I can’t tell you how useful it was to have such forward-looking input – helping us to look to the future in terms of giving as many people as possible the ability to access information

Transparency and accountability

I want to begin with accountability.  A basic tenet of modern government is that it should be accountable to its people.  That it should be answerable for its actions and that there should be sufficient checks on it to ensure that it acts in the interests of the people and not in self-interest.

The idea that for a government, or indeed any institution, to be truly effective it needs to be open to public scrutiny is not a new one.  However, the reality of this has been highly variable.  The extent of meaningful scrutiny has often been constrained by a lack of information, or by control of information by vested interests.  All that is changing as information access is rising exponentially.

We live in an information age.  Information and data – once the preserve of the elite – is increasingly available for all.  Everything from what is happening anywhere in the world to real time market data.  Today, more information is available than at any other time in our history, sometimes for a price, but more often than not, for free.

We have to be aware though. In economics, there is a ‘Gresham’s law’ that bad money drives out good.  People will get rid of poorer value currency and hold on to higher value currency.  If we are not careful, something similar could happen in information – the volume of freely available but poor quality data could drown out access to higher quality, useful, relevant data.  That is where a true information society should step in.

Where information is a currency, and its value is understood, and appreciated.  By doing so, we can genuinely intensify accountability.

I believe that real accountability, in all walks of life, but especially in public life and for public services, can only be achieved by being open and transparent about everything that we do; issues of national security or individual confidentiality apart.  That means not just having some privileged person able to police behaviour, but having the public able to scrutinise routinely.

It is our task to ensure that not only are we transparent.  We should make information and data readily available, and also should ensure it is a good quality currency without seeking to control its exchange.
This kind of transparency is a founding principle of this Government.  For example, you can now go to the Number 10 website and, by clicking on the “Transparency” heading, see:

• Details of everything the government spends above £25,000;
• A list of who does what in Whitehall and what they get paid;
• A list of current and up-coming government contracts;
• And a huge amount more besides.

A shift in thinking

Now this information will not be of use, or even of interest, to everyone, but whatever area you are interested in, you are now free to examine the data and to start asking awkward questions.  Holding us and future governments to account for the way we spend your money!

This represents a fundamental shift in thinking.  Traditionally, as any fan of Yes, Minister will testify, governments of all colours have been somewhat backward at coming forward. 

But when we hide uncomfortable information, bury bad news and obfuscate the facts, we put our own interests before the public’s and we do them a terrible disservice in the process.

In the NHS, poor performance can sometimes be hidden, excellent practice goes unnoticed and, in the worst case of all, someone like Harold Shipman is able to literally get away with murder for over 20 years.

Openness and transparency is not easy.  It shows up our faults, it can sometimes lead to embarrassment.  But we are confident that, over time, it also leads to better decisions and better government.  And it is something that we are determined to see replicated across public services, within health and social care especially.

A mountain of data

The NHS, on any given day, produces a virtual mountain of data.  A million patients see hundreds of thousands of staff within hundreds of hospitals or GP practices and clinics across the country.  Huge sums of money are spent, countless thousands of tests are conducted, thousands of operations carried out and about 60,000 people in and out of A&E departments. 

And every single time that anything happens, a record is made.

Instantaneously amassing and organising this data in years gone by would have been an impossible task.  Like King Canute holding back the tide.  But time, and technology, have changed that. 

Today, we can at least canalise the tide – and the potential benefits for patients are only limited by our imaginations.

The Information Strategy

This is what the Information Revolution is about – capturing the data and using the imagination and the creativity of clinicians, NHS staff and everyone here today to make the very best use of this incredible resource.

As I said, getting the currency of information right means we should offer not just more information, but better information – more accessible, more relevant, more meaningful.

It’s about turning that mountain of raw data into a coherent picture of quality.

To measure and monitor the standard of NHS services.

To hold professionals to account for their performance.

And to bring the NHS fully into the digital age, by empowering patients and professionals through a free exchange of data and information.

We consulted on our plans last year, and we’re currently reviewing what people have told us.

I expect soon to publish the consultation response shortly, with an Information Strategy following shortly after that.

The essential principles of our approach are clear.  We want a genuinely empowered and informed public, pushing up standards by exercising meaningful choice;

We want an online presence for the NHS ranking among the best in the world for content and relevance.

And we want to nurture and sustain a vibrant information ecology, taking in clinical audits and quality metrics, enabling clinicians to benchmark and improve the outcomes they secure.

We’re mindful, of course, that the Information Strategy needs to learn from the past. 

We need to be clear as to the most appropriate roles for central government, for NHS organisations and for service providers from the private and voluntary sectors.

And we need to think long term. The strategy needs to be robust, stable and flexible enough to meet the needs of the NHS for a generation or more, encouraging a more innovative and dynamic use of information to meet people’s needs. 

And there are big issues here:

• Protecting privacy and confidentiality in an open world,
• The role of national standards in information sharing,
• The electronic recording of data throughout the patient pathway, in a way that allows it to be accessed readily by those who have a genuine need to do so,
• Developing a market place in information intermediation to drive innovation,
• Improved interoperability to connect systems together, and
• Better access to information for the public

But get it right, and I believe a new NHS can emerge. 

• An NHS where patients not only have a choice, but the information and advice they need to make that choice. 
• An NHS where we don’t just pay lip service to openness and transparency, but use the power of information to boost accountability and drive up standards.
• An NHS that routinely harnesses the massive amounts of aggregated patient data to drive forward clinical research in the fight against disease and ill health.

This, surely, has to be the future to which we aspire: open, connected and digitally enabled.

The question is how do we get there?

Harnessing the Care Record

A starting point is the effective capture, management and use of the huge volumes of patient data flowing through the NHS.

This is a tremendous source of information – but most would agree that we haven’t yet come close to releasing its full potential. 

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

Many real gains will come from being able to harness the full potential of this record.  To do that we need to improve the way this information is recorded, how it’s used and how it’s shared.

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

Think of the inherent complexity of treating a typical hospital in-patient.  Multiple conditions, multiple diagnostics, multiple treatments.  Then multiply that complexity by a whole ward, add a gap between seeing a patient and writing up their notes and you start to see why it can be so difficult to keep a patient’s record 100% accurate.

But what if a doctor or nurse could tap her lapel and record what they need to there and then?  Their voice could be translated into text for review and then added to the patient’s record. 

This is hardly beyond the realms of possibility and people are already using mobile devices like digital pens to improve and speed up record keeping.

Better data, less form filling, superior care.

And sharing this sort of success here at Healthcare 2011 or at last month’s Innovation Expo can really help to speed up the adoption process.

And what if you could see and control your own data?  You would be free to look at, correct, even update it with things like your own wishes if the worst should happen. 

You could even choose to share it with those you trust, such as Cancer Research UK or the British Heart Foundation.

While this sort of thing isn’t yet widespread, it is happening already. 

I mentioned Harold Shipman earlier.  Imagine the damage done in his area to the trusted doctor/ patient relationship.  Imagine being the doctor who had to come in and replace him.

Well that doctor was Dr Amir Hannan.  Where Shipman was secretive and closed, Dr Hannan has been as open and transparent as possible and has slowly but steadily been able to rebuild that trust within his community.

His patients have access to their own records online, they can email him, he has built online condition support groups and he has put information and transparency at the core of his care for patients.

If transparency can heal the rift left by Shipman, just think what it can do elsewhere.

Data Sharing and Clinical Audit

And care records can be even more useful when anonymised and combined.  The potential to use this mass of data, the largest data set anywhere in the world, for research purposes are hard to overstate.  It could herald the start of a clinical revolution to mirror the information revolution. 

While there are, understandably, concerns over privacy – information must be accessed securely and legally and without causing harm – I believe these concerns are surmountable with a good dose of practicality and common sense.  They should not stand in the way of the very real potential benefits that data sharing can bring.

For the last decade, cardiac surgeons have collected, analysed and published data on the outcomes of their care.  This benchmarking of their performance across the NHS has shed light on good and bad practice, encouraging all cardiac units to focus on self-improvement. 

The result?  Over the last five years, death rates have halved and are now 25 per cent lower than the European average.  You now have a greater chance of surviving cardiac surgery in England than in almost any other European country.

At the very least, this sort of information makes clinicians stop and ask themselves if they really are as good as they could be.  And that can only lead to better care for patients.

Information for patients

Another area where the potential benefits are huge is more comparable information about hospitals for patients.  There are thousands of care providers in England.  When you go to yours, how do you know how good they are?  Are they the very best in the country?  Or the very worst?

We already have a choice of which hospital can treat us, but how do we know whether one hospital is better than another?  At the moment, that’s a hard question to answer.  But in the future, it will be through published data about the quality of their health outcomes. 

Not polishing, not spinning, just publishing.  Letting good quality data tell the story and allowing a whole range of intermediaries interpret it.

This will have two equally powerful effects.  First, providers themselves will see clearly just how well they are performing against their peers. 

And second, patients will be able to use this information to directly improve their own care.

Let’s say that you – or your child, or your parent – have to go into hospital for some form of treatment.  With no information to go on, you will probably opt for your nearest hospital or at least the one that your GP refers you to.  But your GP won’t necessarily know any better than you whether it is the best place for you or not.

But if you have clear, easy to understand information about the quality of the care that different providers offer – the outcomes they deliver – then the situation becomes very different. 

Do you really want to go to your nearest hospital when the care it provides is worse than ones further away?  Do you really put convenience above your own health?  Above your child’s health?

It’s your choice.  Armed with this information, you will become an active participant in your own care.  There really will be no decision about me, without me.

You can see it in everything from booking holidays to choosing a new mobile phone; when people have a choice and access to information they quickly become savvy consumers.  I am certain the same will happen for healthcare, surely the most important aspect of all of our lives.  And as the NHS provides everything for free, the choice will be one based solely on the quality of service and outcomes a provider can deliver. 

Superfast Broadband

The Information Strategy will spark a revolution in patient care.  It will create the structure within which the NHS can improve in leaps and bounds.  But even the most elegantly designed structure will collapse eventually if it is not underpinned by firm foundations. 

The UK has experienced an explosion in internet usage in recent years.  The majority of businesses, homes and now individual people are connected in some way.  Being a particularly technology-literate audience, you will know more than most just what an incredible impact this has had on our economy, our society and our home lives. 

But we are still at the beginning of this new industrial revolution and, like revolutions past, we need the basic infrastructure to be in place if we are to reap the rewards. 

First came the canals, then the railways, more recently the motorways and now it’s superfast broadband.

This government wants to bring this to every community in the country.  To have the best superfast broadband in Europe by 2015.

Much of this is set to happen as companies like BT and Virgin roll out more and more cable to the parts of the country where it makes commercial sense. 

But without government support, that will still leave as much as a third of the population beyond its reach.

That is why, in last year’s spending review, we announced £530 million to help cover the entire population.  Not to fund the extension all together, but to make the sums add up for private investors.  To plug the gap.

Unlimited ambition

Now the role of government should be to ensure a good minimum – 40 meg or so, but why should the industry stop at 40?  Why not 400 or even 1,000? 

Some may argue that there is no need for most people to have services of such speed or capacity. 
But I’m sure many of you will remember that people said the same thing 10 years ago – only then they said that nobody would ever need more than 1 mega bit per second! 

Or, to use another analogy, think of the M25.  When it was first designed, its planners wanted to build a motorway far wider than just three lanes.  But the Treasury said no.  They said there just wasn’t the  demand for such a huge road.  What a short-sighted mistake that was.  And we’ve been playing a hugely expensive game of catch-up ever since, much to the constant annoyance of anyone who uses it.

To misquote Ray Liotta in ‘Field of Dreams’, “Build it, and they will come.”

Telehealth and Telecare

But whatever the services of the future may be, there are real benefits that the internet is delivering today. 

Over 80% of patient interactions with the NHS are face-to-face.  Have you, or someone you know, ever been to see your doctor, for example to pick up some test results that came back negative, and wondered why you had to take half a day off work just for that?

No other industry works in such a way, and by effectively using modern communications technologies, there is no reason why the NHS should either.  And moving just 1% of those face-to-face meetings online would save the Health Service around £250 million a year.

There are huge potential benefits to taking more consultations online using things like high quality video conferencing and home-based monitoring equipment. 

• Rather than time-consuming visits to see a GP, the GP can come to you, virtually, in your own home. 
• Rather than travelling long distances to talk with a specialist, they can talk with you instantly, including potentially with them having immediate access to vital signs or diagnostics 
• And rather than having to make regular visits to see a nurse for routine testing, you can be trained to monitor your own condition, or have equipment installed that will do it automatically, and update your records remotely.

We are in the process of concluding the world’s largest pilot of telehealth and telecare – the Whole System Demonstrator.  This is an incredibly exciting programme that will provide vital information on the effectiveness of the range of technologies that can help people remain independent. 

Increased use of technology will mean millions of people in years to come will be able to stay in their own home and avoid unnecessary hospital visits or being forced into residential care. 

For those in the pilot, it has already changed their lives.  One of the three main sites is in Cornwall, where one participant, Eddie, from Looe, has had a lung problem that not only meant he was house bound, he was also a regular visitor to A&E – attending 5 times in the 6 months before he joined the pilot.

But by having telehealth equipment installed in his cottage, he can now monitor his own oxygen levels and blood pressure and take appropriate action when needed.  The confidence this has given him means he is now venturing beyond his front door for the first time in 5 years.

Simple changes, and an extraordinary difference.

Most of these services will work well enough with a good, reliable, current generation broadband service.  But widespread availability of superfast broadband will not only make it easier to roll these services out to the community, it brings with it the potential for entrepreneurs inside and outside the NHS to develop new services and explore new ways to serve patients and to save money.

And there are significant gains to be made for community-based staff, giving them all the information they need whenever they need it. 

Just like in Kirklees in Yorkshire, where community matrons use hard wearing and secure laptops in their discussions with patients, to arrange for prescription changes and to cut out unnecessary visits for them and for their patients.
Openness of the market

But just as we want to bring openness to the NHS, we also need to bring openness to the way we do IT in the Health Service.  The old way of centrally planned, fiendishly complicated billion pound contracts with a small number of providers just didn’t work.  One size does not fit all.

So in the same way as we want to open the market for healthcare up to any qualified provider – whether from the public or private sector, a social enterprise or a charity – so do we want to open the IT market up to any provider, large or small, who can help deliver better care for NHS patients.

I was at the NHS Expo earlier this month, and there was a real buzz about the potential of joining up data across the NHS.  There were dozens of companies each with exciting ideas about how they can help clinicians to improve patient outcomes. 

Large ones like Intel who were extolling the possibilities of secure ‘cloud-based’ computing for health, or Cap Gemini with their RAPA electronic patient alert system that notifies a designated worker, such as a GP or specialist, as soon as their patient walks into A&E.

And smaller companies like Sandhill with their commissioning management software or NDL with their Blackberry app that helps community staff in the field to organise, record and synchronise their day on the road with the care records back at the surgery.

There are so many organisations out there with so many ideas.  I want to give all of them the chance to prove themselves for the benefit of patients.

Conclusion – No decision about me, without me

Over the next few years, I look towards a modernised NHS.  Outcome focussed, clinically led and patient centred.

By publishing outcomes data for all to see, we will change the culture of the National Health Service.  On the clinical side, providers will be held to account for the quality of the care they provide.  They will have the hard data to see how they are performing against their peers and the incentives to improve their performance.

But an even greater culture shift will be for those who use the NHS.  For the first time we will open the door on the ‘secret garden’ philosophy that has hidden the performance of the NHS, and held it back since the Service was founded.

We will give patients the information:
• that can reveal the true picture of local services,
• that can enable patients effectively to choose who to trust with their own care,
• that can involve them in the decisions to be taken about their own treatment

For there truly to be “no decision about me, without me.”

Thank you.

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