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The age of information awaits the NHS and its patients

Only by adopting a new and radical mindset can the healthcare industry reap the benefits of up to date, accurate information, writes Mark Flannagan.

Improved data is critical for making the government’s NHS reforms work. Without access to accurate, relevant and usable information, patients, clinicians and policy makers are not able to make rational decisions within the healthcare market.

It is essential that patients are able to make informed choices about their treatment and the clinical outcomes for their conditions based on high-quality, up to date and user-friendly data and information. Knowing as much as possible about their condition helps patients understand what they have to deal with, which makes for a better patient/doctor relationship. Too often the NHS is letting patients down to such a point that they are not even able to get a basic understanding of their disease. It seems that the NHS is determined to protect a patient’s privacy to a degree that is institutionally secretive, and any attempt to open up access to data is being countered by the words “patient confidentiality”, even though in doing so it is effectively harming patients.

When I took up the role of chief executive of Beating Bowel Cancer I wanted to know the figures – how many people were dying or surviving, and what the detail was. My requests were met with comments such as “it’s too difficult” or “too complicated” to get this information. And, “the best available” information was up to four years out of date. Even though it is perceived that we’re doing quite well at providing cancer data I was told we would have to wait for vital information and figures relevant to diagnosis. This cannot be allowed to continue. If we are to design a health system that meets the challenges and can be measured on how it is doing then it is critical we know how many people are being diagnosed and when.

The current “system” is slow to respond to requests for data and, too often, we have to accept the lowest common denominator. Any conversation around data always turns to a discussion on how incredibly difficult it is to get it right and that we first need to build the means to get this data, to gold-plated standards of quality and security.

The problem we face is with information policy the process has become a more important driver than the desired outcome. It does appear much of the debate seems to have been prejudiced by the NHS’s previous experience with IT procurement. As Jeremy Taylor of National Voices and co-chair of the Future Forum’s information work stream told HSJ, the information agenda had been “ceded to IT people, who had disappeared up their own technological complexities”. We have to challenge this mindset and say it is no longer acceptable.

The first challenge is to use the data that we already have in a way that is meaningful, user-friendly and easily accessible to both patients and clinicians. That is why, back in September 2011, Beating Bowel Cancer launched its Bowel Cancer Map to fill gaps in information and make up-to-date data on bowel cancer available to key stakeholders. With the excellent support of the Northern and Yorkshire Cancer Registry and Information Service we took the radical step of providing access to incidence and mortality figures by using postcode access. A surgeon member of our medical advisory board recently told me he is desperate for up-to-date information about how he is doing compared to the surgeon next door because it makes for better outcomes. It is very difficult to achieve this when the figures are not available or out of date.

Beating Bowel Cancer believes health secretary Andrew Lansley was spot on when he said: “High quality health and care services depend on good information. The right person having the right information at the right time can make all the difference to the experience of a patient, service user or carer.”

The NHS has to respond positively by accepting that we live in an information age, where nothing can be left unknown and patients and clinicians have access to the right data when they need it.

We cannot allow the best to be the enemy of the good when it comes to providing information. “Quality” should not be used as a barrier to access of information. Patients are smarter than many give them credit.

They can interpret and use information when provided. So, despite the promises outlined in the DH’s information strategy, we need a proper approach that is not just about IT systems but is about giving patients access to the information about their condition they need to improve their care. If we get this right, then it would truly be the information revolution the government is looking for.

Readers' comments (3)

  • Mark, when Trusts and people like yourself start treating Information and IT services with respect and listening to what they say you might start getting somewhere.

    Too many times I've seen senior directors ask for something to be told "no problem, but it will cost £x" and then go to a board meeting and say IT can't do it “it’s too difficult” or “too complicated”.

    CIDS is a prime example of this, it's a massive piece of work for Community Services and yet when you look at the dataset it does not provide any granular activity detail (i.e. READ, IDC10, SNOMED, etc) which would help with some of the data requirements you list.

    Trusts are frantically trying to get compliance with this requirement from Monitor and some big procurements are taking place on the back of this.

    Once the data is published however, people like yourself will say "why wasn't this level of detail included?" and blame IT/Information for it. Don't worry though, I'm sure someone can write an app for an iphone over a weekend that will resolve the problem.

    To be fair to the NHS Information Centre, they've had CIDS thrust on them too, as politicians obviously desperate to show a difference before the next election are pushing hard for this data collection without thinking their requirements through.

    In this, history is repeating itself too, as the same thing that happened with NPfIT whereby the contracts were so loosely written initially to get them tendered before the election that the likes of CSC/BT are now practically impossible to remove because they can say they delivered against these loose requirements - and the subsequent tangle of Additional Service Requests issued to try and fix them.

    In regards to your IG suggestion too and again linking this to my point about the relationship between an organisation and it's IT/Information team - I've seen an IT person lose their job because a nurse lost a laptop with patient information on it - the nurse in the meantime got away with a warning.

    I'm hopeful that once Clinical Chief Information Officers are appointed it might be possibe to start to re-dress this balance.

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  • Jules Acton

    Well said Mark. See also National Voices' 10 Tests for the Information Strategy, based on what service users are calling for:
    Jules Acton

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  • I share your frustration. However, like the first commenter, I would throw a few more thoughts your way.

    The first is that Information and IT are not the same thing. To characterture: someone coming up the ranks of "Information" is more likely to understand what data is really needed, what constitutes "good enough" data and how it is best presented. Whilst someone with an IT background will have more experience in managing a large budget / service and delivering big projects. The NHS currently values the latter a lot more than the former. Which is why you'll almost always find the most senior person in IT/Information in an organisation will be from an IT background. If you want better information then you need to value Information at least as much as IT, and recognise the difference.

    Secondly. Senior managers, Execs and clinicians need to be grown up about the data and information they get. They need to understand and be open to adult conversations about evidence based on imperfect data. The main reason you come across the mind-set of "the data isn't perfect so we can't give you anything" is that too often when someone presents something based on imperfect data they are promptly ripped apart for that fact. (With a vigour directly proportional to the degree to which it tells them something unwelcome.) That's got to change. The concept of 'fit for purpose' needs to be understood and accepted.

    Thirdly, be less prescriptive about the solutions and more descriptive about the problems. Don't say here's a new clinical system, you all have to use it by date X. Say here's the standards we want any clinical system to follow, you've got X time to be compliant. CfH were bad for this. The IC considerably better.

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