22 June 2011

A quiet revolution at the NHS Information Centre

Tim Straughan came as a surprise to me.  I am not sure how after three years of following the Stafford Story that day 99 of the inquiry was the first time I heard of the NHS Information Centre. Probably because I have a blind spot for acronymns.
The NHS information system is an important part of the journey to better information about health care. This journey has been going on for many years, and it will continue under this government. It became very apparent that we will be hearing a great deal more of it as it takes the central role in bringing about the “Information revolution” which is one of the key pieces of the NHS reforms.
Take a look at their website http://www.ic.nhs.uk/ which is astonishing.
About us
The NHS Information Centre is England's central, authoritative source of health and social care information for frontline decision makers.
Our aim is to revolutionise the use of information to improve decision making, deliver better care and realise increased productivity.

I have plenty to say about the NHS reforms, most of it uncomplimentary, but where the plans for the NHS Information centre come in I think I feel reassured.
Mt Straughan is a quietly humorous and diplomatic man. He speaks with precision and economy.  He runs a 500 strong team that deals with the data collection, analysis, processing and dissemination of an astonishingly varied mass of data designed to help us see what is going on in the NHS and social care systems.
We do need an information revolution, and the Midstaffs story shows us many of the reasons why.
Midstaffs and information
Throughout the Mid Staffs Inquiry we have been repeatedly hearing about problems with access to information
·         There are people who had access to a piece of information but were missing out on another bit which might help complete the picture. 
·         Bits of information that people think have been hidden have attracted huge and unwarranted attention. This has created ideal breeding grounds for Conspiracy theories.
·         Information has been seriously misunderstood and misused.
·         There are question marks about the quality of quite a lot of data, and it is clear that staff collecting and inputting data do not always have the same understanding as the system designers.
·         There have not been enough trusted people to advise on the quality of information, and many decisions, some of them important ones, have been taken by people who do not understand the limitations of the data they are using.
·         There have been simmering rows and resentments between different statisticians with different ways of measuring things.
·         There has been a major problem with the use of information by the press, which must relate to both the way in which information is given to the press and media, the responsibilities they have to use information correctly, and the options we have for challenging them when they need to be challenged.
Statisticians and Clinicians
What we perhaps see, when we look at the way in which Statisticians and Clinicians interact is a kind of mutual incomprehension. The Statisticians that I have listened to within the course of the inquiry are people who care very deeply about the health service and know that they have something valuable to offer. They know that by helping people to challenge their thinking and see things differently that they can help to transform the delivery of health care. Clinicians are too often swamped by dealing with day to day pressures of looking after individual patients in an overstretched health service, and will often feel quite irritated with what looks like additional things that they are required to do.  
Both Clinicians and Statisticians would agree that the task is to improve safety and quality of care for patients but perceptions of what helps with this will vary.
The interface between statisticians and Clinicians is further complicated by political rows about the effectiveness and cost of the health service.  This often leads, as it did in Stafford, to statistical tools which were designed as an honest tool for assisting clinicians make better decisions, being abused as a political weapon to beat the NHS and the government of the time.  
Often the pressure to complete data inputting is financial or part of the regulatory burden. As the health service attempts to measure performance to ensure value for money then failing to complete paper work on time, or in the right way can have consequences.  The pressure to complete the task without the necessary understanding or attention to detail is a real issue.
The private sector issue
None of this is helped by the conflict between different information companies that has erupted in the case of Stafford Hospital where the views about the quality of the information are in direct conflict, or by the deep hostility that many people within the NHS instinctively feel towards the involvement of commercial companies.
Distrust of statistics used by the media and politicians.
Many people do have a natural scepticism about Statistical information. This is not surprising. A huge number of news stories and the kind of rows that routinely erupt in PMQs are based on Statistics, often wrongly used or wrongly presented, so trust in statistics is being routinely undermined.
The media love dramatic stories, and most journalists are come from an arts background and are not good at dealing with the intrinsic difficulties of probability data, so we get the “swine flu” scenario, with Jeremy Paxman demanding that the chief Statistician tell us how many millions of people are going to die.
Statistics used well can help the NHS save lives, and can help the public and politicians see that they do so.  Statistics that are misused can cause distress, and confusion. 
The Role of the NHS information Centre.
All of this forms a background to the role of the information centre.
We have seen a huge proliferation of different sorts of data, and huge arguments about the quality of data. We are, as Tim Straughan says, data rich and information poor. The mission of the NHS information centre is to cut through these arguments. To make data available to anyone who can make effective use of it.
The aim of the information centre is very ambitious. It is there to gather as much information about the health service as possible in one single place. It will make it available for people to see in the most transparent way possible. The centre aims to cut out duplication, and will work with a range of people who can provide a service of analysing the data. Some will be within the NHS, many will be private sector firms or individuals. The uses to which this information will be put are only just beginning to be imagined. The users will make use of the data with clear understandings of the rules of use. Much of the information they produce will then come under the umbrella of the Information centre. Users are already being invited to set up their home pages within the Information centre website.
Tim Straughan talks about the need for greater confidence in information – The need to be free from political interference. There also need to be the possibility of sanctions against people who breach strict rules governing the use of official statistics. He mentioned that there has already been an occasion where a minister has misused figures on Knife crime which came from NHS sources, and has been given an official reprimand by the National Statistician. 
Given how much time and energy is wasted by exercised like having to fact check just about everything that is said in PMQs and ministerial questions, and the lack of public trust that this generates then I would personally welcome this. We need our politicians to be using good information. We need the press to be using good information, we need both of them to be able to check with authoritative sources, and we need there to be effective ways of challenging them and getting corrections made when they are wrong.
I am not expecting miracles here, but I think that the intention behind this information centre is genuinely to improve the quality of information that informs the public and informs political decision making.
Tim Straughan was asked about what data gets collected. He says that there is a remarkable degree of global agreement on what it is needed to collect.
In the Stafford Case we have got very bogged down in the issues surrounding one particular set of data, the HSMR system. Tim says that we are moving away from the idea that one figure can possibly tell the story, There needs to be ways of cross checking with a wide range of other information. He says the centre is working with 300 indicators that can show us a much more rounded and complete picture.
Health service managers and the public will have access to a dashboard of indicators that will both prevent simplistic observations and help us to see better.
The intention is to carry information about many things including :
·         Outcomes.
·         Complaints
·         Work force Data
·         HSMR
·         Prevention
·         Population health
·         Lifestyles
·         Primary Care
·         Community care
·         Social care.
Moving towards consensus.
The kind of issue that happened in Stafford with the eruption of a dispute between rival information companies is unfortunate, and the information has already played a significant role in bringing the parties together to more towards a mutually agreed system for the future.
Views on Dr Foster.
Tim tells us that there are very mixed views within the health service about the company. Some are firm believers in the system, others are not. Many people felt strongly that the publication of the League table without having made the methodology available, and gained universal acceptance of their methods was certainly premature, and probably inappropriate.
On the subject of transparency Tim can see both sides of the argument. He defends the DFI because He says that they did in fact believe that they had published their methodology in a transparent way, but he also accepts that people found in practice that there was not enough detail to permit people to replicate the results and so people were still not convinced.
Tim is very clearly determined to get people to work together. I believe that it is possible for him to do this. Many of the disagreements that have existed are down to extraneous factors outside the substance of the statistical material. When viewed calmly, and out of the glare of publicity that has bedevilled this issue people can see that this is the case. 
Tims view of the individuals he has met in relation to the Stafford case is a refreshingly generous one. He values the skills, the creativity and the integrity of the individuals involved.  He describes DFI people in particular as sparky people, pushing the boundaries of knowledge.  
One of the issues that did emerge about Dr Foster is that as they were working with the DoH to advise on statistics that they could not bid for the work that they wanted to do. There has been a separation of the DoH from DFI so now there is no longer a conflict of interest.
Francis report and SHMI
The problems between the different groups of statisticians became fully apparent during the first Francis inquiry. He recommended work to resolve that and that is why the NHS information centre brought the Statisticians together to thrash out the framework for the SHMI system.
The Concordat on HSMR
As a result of the work towards SHMI there is now a definitive statement on the limitations on HSMR and the assumptions that can be drawn from it. This clarifies that the use of the 400-1200 excess death figures for Stafford is inappropriate. This concordat which we saw briefly on the screen at the inquiry shows that most of the key players in the NHS, including Doctor Foster Intelligence have signed this.
The Future.
Tim is very proud and optimistic about what is being to develop information systems. It is clear from what we have heard from him and from Richard Hamblin that there is real potential for something remarkable.
Restoring Trust.
Robert Frances picked up on the issues of political interference with statistical information and the need to protect statistics against misuse.  He is suggesting that NHS statistics should be issued through the National Statistics office, and that there should be clear codes of practice to prevent misuse, with penalties for those who do.
The complicated and as yet little understood saga of Stafford and HSMR has been the trigger for beginning a remarkable information revolution.
The future should be very interesting indeed. 

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Diana Smith