Editorial Monday 21 May 2012: DH publishes information strategy. Long on hallucination; short on how.

The DH has published its latest, much-delayed information strategy.

Yes, I knew that would make you happy.

Will it make a difference?

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So, what's it all about, Alfie?

Well, 'The Power Of Information: Putting All Of Us In Control Of The Health And Care Information We Need' is about 115 pages long.

No, seriously. It's about information being a really, really important thing. A good thing, which will transform healthcare.

Kind of like fibre in our diet. E-fibre, if you will.

And it is also a strategy.

So that means we should expect it to be strategic.

Doesn't it?

TPOIPAOUICOTHACIWN tells us that it apparently "marks a shift in the way information must drive better health, care and support – to improve our experience, quality and outcomes of health and care services, putting people truly at the heart of care.

"Using digital and online services can simplify the more routine aspects of care, such as booking appointments, requesting repeat prescriptions, or self-assessment for social care. The strategy sets out ways to reduce the frustrations we experience, such as repeating or recording the same information many times for different staff, or travelling long distances for services that could be delivered better in other ways. Not only is this more convenient, but it can also help care professionals to focus more time on face-to-face aspects of care and provide more support for those who need it to benefit from technology and information.

"Clear direction from central Government is vital. So too are the standards that allow different systems to communicate with each other and to enable us to access the trusted information and services we need to improve our health, wellbeing and care. Equally, and in some areas, progress will be greater with the centre ‘getting out of the way’ so that local organisations, system developers, information specialists, voluntary sector organisations and others can innovate".

Mmmm.

It's impossible not to remember the outcome of the Whole Systems Demonstrator telehealth pilots, which found that the outcomes of the £31 million investment could politely be described as mixed. A cost-per-QALY of £88,000 would get a swift 'no, thank you' from NICE (unless, of course, we magic up a National Telehealth Fund, a la cancer drugs).

More positively, there seems to be signs of learning from the NPfIT farce that setting interoperability standards is a key role for government.

Ambitions, not targets: where have we heard that before?
So what else is there? The executive summary starts with platitudes about linking up to public health and social care, while not mentioning the impending funding uber-issues for the latter.

We also hear hymns to transparency. Integrated care. Preventative use of information by individuals, the system and regulators. Addressing determinants of health, and performance and outcome variation.

OK, fine, that's all the right mantras.

So how will it happen?

Aha. Good question.

Well, we get the following "ambitions":
• Information used to drive integrated care across the entire health and social care sector, both within and between organisations;
• Information regarded as a health and care service in its own right for us all – with appropriate support in using information available for those who need it, so that information benefits everyone and helps reduce inequalities;
• A change in culture and mindset, in which our health and care professionals, organisations and systems recognise that information in our own care records is fundamentally about us – so that it becomes normal for us to access our own records easily;
• Information recorded once, at our first contact with professional staff, and shared securely between those providing our care – supported by consistent use of information standards that enable data to flow (interoperability) between systems whilst keeping our confidential information safe and secure;
• Our electronic care records progressively become the source for core information used to improve our care, improve services and to inform research, etc. – reducing bureaucratic data collections and enabling us to measure quality;
• A culture of transparency, where access to high-quality, evidence-based information about services and the quality of care held by Government and health and care services is openly and easily available to us all;
• An information-led culture where all health and care professionals – and local bodies whose policies influence our health, such as local councils – take responsibility for recording, sharing and using information to improve our care.
• The widespread use of modern technology to make health and care services more convenient, accessible and efficient;
• An information system built on innovative and integrated solutions and local decision-making, within a framework of national standards that ensure information can move freely, safely, and securely around the system.

Right. Well, that is a list of stuff: the various 'what's. That is OK for a strategy, I suppose; it's just powerfully short of the 'how'.

The word 'ambition' should give us a clue. I might have an ambition to dance like Fred Astaire. Or even Ginger Rogers.

But if I don't also have talent, determination, a training programme which included a few miracle-workers and the most patient choreographer imaginable, then I'm not going to get very far towards realising my ambition.

So, do we have sight of any concrete hows?

No we do not. We have some more platitudes: "We need to have confidence in the quality of the information we use ... The success of this strategy depends as much on a culture shift – in the way patients, users of services and professionals think, work and interact – as it does on data or IT systems".

Oh please. Spare me this crap. The great Nigel Edwards has often pointed out that any strategy that relies on 'a culture shift' is essentially forming an organisational plan which relies on this key yet utterly unknown stage - Edwards rightly points out that this is one from the 'and then a miracle happens' management playbook.

Chapter two offers a list of hallucinations - sorry, "visions":
• Increasingly, we will be able to interact with health and care services online, for example to book appointments or communicate electronically.
• Letters from health and care professionals about our care need to be available electronically to us, and to other professionals involved in our care.
• It will become normal for us to be able to access health and care services – including our own records – online.
• Electronic access to our own care records where we request it will start with GP records by 2015 and our social care records as soon as IT systems allow. Work with patient, service user and professional bodies and with industry will enable this access to expand progressively to our records across health and care.
• Increasingly, we will be able to obtain personalised information on opportunities to improve our own health or manage the consequences of any illness.

Quite a few of these are already possible, or should be done as a courtesy.

What other fun is there in store?

• Health and care professionals will be able to access relevant records online – simply, securely and all in one place (eg. via ‘clinical portals’ or other solutions).
Yes, we have an awesome record with this.
• Information standards will be set nationally for the whole health and care system, so that different parts can connect and communicate with each other and to improve the consistency and quality of information.
• The NHS number will be used consistently.
See my last observation
• The Department of Health and NHS Commissioning Board will pilot new ways to incentivise the use of integrated barcode medication administration systems in care homes by 2014, with the results informing wider implementation planning.
• Professionals will lead better, more standardised and useful recording of information in our records, wherever possible capturing data at the point of care.
• Data from our records will be combined and linked together with other data in a secure environment, then made anonymous. This data will be used to audit quality, improve services, guide commissioning, and identify trends and patterns of health.
• The research and life sciences community will have access to a greater wealth of information to help drive improvements in health and care.
• Over time, the information from combined records will replace cumbersome national data collections.
• There will be a single comprehensive online ‘portal’ provided by Government from 2013, as a link to trusted information on health, care, support and public health.
• Alongside the Government’s core role, a wide range of organisations will be encouraged to take a broader role in making information accessible and usable for people.
• More information will be publicly available about care at clinical or professional team level and information that enables us to ‘benchmark’ services, such as clinical audit data. Similarly, more information will be available to help us see and compare the quality of care provided by local services, to help us choose which best meets our needs.
This is good stuff
• We will be encouraged to provide more feedback, instantly wherever possible, which will be used to improve our services – making each encounter count.
• We can all expect information about the quality and performance of health and care services to be publicly available (unless there is a strong reason not to publish it), as part of a wider drive to increase public-sector transparency.
• The NHS and local government will do more to offer support for those who need it to access, understand and use information.

OK, that list improves towards the end - quite a bit.

We are still shy of the 'how'. All we get is "Chapter 5 covers the organisational elements and the culture change that will underpin the strategy. Chapter 6 sums up the approach and the next steps needed to make the information revolution outlined in the strategy a reality".

As well as these, "Annex A provides a summary of specific commitments and recommended actions. Annex B sets out a ‘presumption of openness’ (ahem a-fucking-hem!)and transparency for information about the quality and performance of health and care services, and specific open data commitments. Annex C sets out the roles and responsibilities of different bodies in relation to information. It highlights the role of the NHS Commissioning Board, Public Health England and the Department of Health, working with the Local Government Association, the Association of Directors of Public Health and the Association of Directors of Adult Social Services in taking this agenda forward".

Ooo-kay.

The new delivery metrics
I just remark in passing that a knighthood should be awarded immediately to whichever civil servant came up with the brilliant delivery metric at 1.9 "In time, implementation of this strategy will mean ...".

That is pure and unadulterated genius. Just imagine:

"Would you like your test results by email or SMS, Mr Jones?"

"Oh, I don't mind doctor, whatever suits you. When will they be sent?"

(A meaningful look) "In time, Mr Jones. In time."

We also learn at 1.16 that "this strategy is deliberately and unashamedly aspirational". Now clearly, I believe creativity with language to be a wonderful thing, but I sense that the authors of this document may be stepping a little beyond the realm of the credible with that statement.

The Information Centre ground
Chapter 4 reveals plans for the NHS Information Centre to be the one-stop-shop for data. 4.26 onwards state "Beginning with publishing national clinical audit data by clinical team from April 2012, all clinical outcomes data will be put into the public domain by 2015. Building on the successful approach taken in relation to some specific services – notably heart surgery – for areas which are not already planning to release data earlier, the initial stage to April 2013 will enable time for local action to be taken on data quality. This will allow ongoing opportunities for professionals to check their own data for accuracy prior to wider release. The intention will be for data by clinical teams (relating to activity since April 2013) to be available from April 2014 – alongside earlier data for areas where it will be available sooner. (It is important to recognise that for some conditions, a successful outcome will depend upon well-integrated care across a number of different teams.)

"The Health and Social Care Information Centre will quality assure and then publish the information it collects, combined and made anonymous, as the default position. This includes a move towards the publication of existing datasets by clinical team. Indeed, this kind of data (e.g. by lead consultant) is already collected – but currently uses a complex process of extraction and coding from paper notes with limited clinical validation, and further work is needed to improve the quality and usefulness of that data.
Information that puts the data in context will be vital to make the best use of it. This is true whether patients are using the information to exercise choice, or whether professionals are using it to improve the care they provide. Collaborative work with professional organisations such as Royal Colleges will help produce guidance, tools and explanations to help people understand the data and support service improvements. The more complete picture of health and care and how it is managed will mean providers become truly accountable to their local areas.

"Health and Wellbeing Boards will publish local health and wellbeing strategies and provide a forum for dialogue. The Care Quality Commission will continue to provide information on how providers are meeting essential levels of safety and quality.

"Simpler performance measures, metrics or indicators that combine existing information available about organisations (patient reported outcome measures (PROMs) information, MRSA rates, patient feedback etc.) into a small number of indicators would be easier to understand and easier to share with other information providers. This would make comparable information more accessible and meaningful to us – and would also feed into the outcome metrics and indicators used and published through national outcomes frameworks. For social care, the forthcoming care and support White Paper will set out more detail".

Where's the how?
Chapter 5 gets desperately confused, talking about kit (cloud servers, powerful handheld devices, web-interfaces) under the sub-heading 'The vision'. Sorry, but telling us that cloud servers and powerful handheld devices exist is not a vision. It's a shopping list, at best.

Chapter 6 offers little greater clarity: "The ambition is bold, and it will take time";  the Annexes little more.

This document has a few good things in it, and an awful lot of vision / hallucination stuff.

It doesn't have any clarity about 'how' things will happen.

It exists. It's not what I'd call strategic.

It wasn't worth the wait.