When it comes to the importance of information to NHS management, policy could not really be any clearer. The Department of Health’s recently published Health Informatics Review, led by Matthew Swindells (former policy adviser to Health Secretary Patricia Hewitt, and now with Tribal Consulting) stated "the need for high quality information in the NHS and social care in England has never been greater". Health Minister Lord Darzi's Next Stage Review likewise emphasised the agenda for "health in an age of information and connectivity".
In an NHS based on patient choice and commissioning, where both the 2008-9 Operating Framework and the Darzi Review have put quality and outcomes centre stage, a trusted 'honest broker' is needed to link the patient-level information the service needs in a secure and trusted environment. The NHS Information Centre aims to fill that role.
Tim Straughan, chief executive of The NHS Information Centre, is clear about what will constitute success for his organisation. "We need to work with and for the service - and that means front-line clinical staff and managers at all levels - so that they see The NHS IC as the first port of call for all NHS management information," he says.
"I see our principle roles to be, firstly, as a syndicator of authoritative data and information, making it accessible to different users in different formats according to their needs. Secondly, we have an 'honest broker' role and, thirdly, as a signposter, letting people know what resources are available and where, and making access to data easier.
"We are the central, authoritative source of information to the NHS and social care. We have a talented staff team, and a range of products for the service. We need to let people know about them, seek their feedback and involve them in putting information at the heart of improving healthcare."
Commissioning and quality
Mr Straughan says: "The NHS IC's role is as much about supporting quality as about supporting commissioning. To underpin quality, a lot of enabling support is needed from information. Commissioning has a hugely important role to play to play in driving up quality in NHS."
Clinical engagement is, Mr Straughan notes, essential to successful commissioning. He says: "We know that clinicians respect good, timely data. Our dialogue with them is ongoing, and we’re learning about their wants and needs all the time, and adapting to meet them. You’re going nowhere without clinical engagement."
Freeing up capacity
Brian Derry, programme manager for The NHS IC and is chair of ASSIST (the Association for Health Informatics Professions in Health and Social Care), emphasises that over recent years, both central performance management and changes in payment systems have driven more focus onto information issues.
"These needs already occupy much of the information capacity within PCTs, with a range of collecting, processing and disseminating information," he says. "Part of The NHS IC’s role as honest broker is to remove some of the information burden, and free up some information staff capacity locally for service improvement work."
Mr Derry adds that the principle challenges in information facing the NHS are about building skills and capacity, among general managers and clinicians - significant workforce development issues. "The NHS IC updates what information is collected so that it’s useful and relevant to today’s NHS, and helps build practical and user-friendly systems and processes to bring the data together," he says. "Any industry anywhere faces similar issues on how to make best use of information and technology: it’s just that in the NHS, the stakes are rather higher!"
Mr Derry is confident The NHS IC can help reduce the burden of data collection and avoid the bugbear of duplication. By doing so, he says it will help free up capacity so the service can focus on producing and using material, and improving data quality. He suggests that The NHS IC can help avoid situations where the service is faced with various regulators making similar, but slightly different information requests. He cites the example of the Healthcare Commission agreeing to use information provided by the Clinical Negligence Scheme for trusts. "That's the kind of good practice The NHS IC can facilitate as a 'clearing house' for information for regulators. The NHS IC can set real standards for professionalism and professional integrity - leading by example," he says.
Independent information quality
The doctrines of contestability and plurality may be less emphasised in the post-Blair era, but the involvement of the independent and third sectors in healthcare is an ongoing fact of life. Since NHS commissioners are using NHS resources to purchase care from these providers, and indeed from any Healthcare Commission-approved private provider who can offer treatment at the NHS tariff price under free choice, the issues of data quality are equally important.
Researchers have pointed out that the different information requirements from the early independent sector treatment centres made direct comparison of their output with NHS trusts difficult. Martin Orton, strategic adviser to The NHS IC, notes: "Wave One ISTCs were required to submit commissioning data sets, the most important part of central data.
"There were issues with implementing and enforcing data requirements due to flexibility in other areas of the contracts. In Wave Two and under extended choice, we now say the independent sector have to provide the same basic data as the NHS. We also now monitor quality of information from ISTCs, whereas in the original situation we only looked at quantity of information." Information about independent sector data quality is now available on The NHS IC website, www.ic.nhs.uk/is
Assessing data quality
Mr Orton adds that The NHS IC measures NHS-wide admitted patient care (30 data sets) and outpatient commissioning data sets. To determine the quality of this, staff dig down into detail by provider and site - and interrogate data quality using VODIM methodology (Valid, Other, Default Invalid and Missing). As an example, he chooses ethnicity data. "The proportion of technically valid codes are quite high," he says. "However, there is a noticeably higher incidence of the default code of 'not stated known' in independent sector data returns." Mr Orton says that only 35 per cent of ethnicity returns are valid if excluding default and missing codings, whereas about 80 per cent are valid in NHS returns. "Use of default codes is usually about not having effective processes."
Mr Orton emphasises Tim Straughan's message on the importance of clinical engagement. "Following the Darzi review, we're now working hard with Bruce Keogh and his Department of Health team on new clinical quality indicators. We want to hear from practitioners what they need from the data. We want their ideas on clinical measures of quality, not for patient viewing. What do we need for the future? With patient-reported outcome measures coming in, how can we make better use of current data flows?
"We want to work with clinicians to develop meaningful metrics."
Data architecture and standards
Monica Jones, The NHS IC’s head of architecture and data standards, notes that a principal theme of the DH informatics review was around the importance of data standards. "We can’t measure quality without knowing what we’re measuring against. So there’s a real emphasis within The NHS IC on getting quality data to measure a quality service. To compare accurately across the NHS, we need common definitions," she says.
Previously programme manager for standards and classifications, Ms Jones emphasises that a joint programme of work between The NHS IC and NHS Connecting For Health, led to the informatics and data standards programme.
Much of her team's work is developing the concept of a logical record architecture for health and social care - an underpinning model of what data should be shared across multiple applications, and how to manage it in independent data systems.
"This was probably needed a few years ago," she says. "NHS Connecting For Health inherited the existing NHS data model and dictionary, but to extract data and information for more than primary purposes, for secondary uses as well, we need to establish processes, rules and see how data will be interpreted.
"This comes under 'architecture'. It’s about function requirements: how to fit around patient journey on the care pathways and clinical flow models."
Ms Jones emphasises that her team look at pathways, not specialty-specific data silos such as cancer. The aim is for a cradle-to-grave collection of patient-centred information. "The current NHS data model is very organisation-specific, about hospitals or ambulances or A&E departments. But for the population as a whole, healthcare is about people. So we need individual care records to be built and collected (and not multi-duplicated), so we can be confident of seeing the right person at the right time for right procedure (for obvious patient safety reasons). Which we can only do with a patient-centric underpinning model".
From Korner to today
The 'commissioning data set', which comes through from every trust to central SUS returns, was designed in 1981 as Korner returns (named for Dame Edith Korner).
Predominantly collected monthly from the acute sector, these are used for a host of things, but are also a huge monolithic data set. Ms Jones points out that this means a big burden to collect, format correctly and push to the centre. "It was designed for the old NHS that doesn’t exist any more," she says.
"So our second major workstream is to define a replacement for the commissioning data set for the 21st century's NHS. This allows us to move on from secondary care data (which is just 30 per cent of what a PCT commissions. If we want to know what’s happening in community, primary and social care, we’ve got to concentrate on expanding our opportunities to collect data and on defining information needs."
As care moves out of the acute sector and closer to patients' homes, Ms Jones notes the need for more effective community data collection. "Currently, there's no real community data set, leaving big gaps in our understanding from a payment by results perspective. If we don't know what’s being done thanks to collected data, we can't work out how to disaggregate the tariff and so reimburse organisations for work, so we need much better commissioning data sets.
"If we get logical underpinning architecture, and a little, event-driven data set, that could free up activity for NHS staff to do what they want to and are meant to be doing, rather than collecting data. We need systems so they can collect data automatically during normal day-to-day patient care and send it straight to data systems to be compiled and analysed."