The NHS Commissioning Board will be allowed to use patient data to enable CCGs to compare their performance against other commissioners.

The GPES Independent Advisory Group (IAG) has approved the use of the General Practice Extraction Service (GPES) for patient-anonymised data on demographics, diseases, events and referrals from GP systems.

The Commissioning Board said the data would be used by CCGs to analyse outcomes, compare data between different practices and to map lifestyle factors against public health estimates.

Although the Board is now free to cherry pick data on a monthly basis, the IAG has ruled the action is dependent on three conditions. The NHS CB must clearly define the purpose of data extraction; the BMA and RCCP should be involved in discussions around what data is used; and that the extraction of data will maintain patients’ rights at all times in line with the NHS Constitution.

Critics of the move have voiced concerns that patients will be unaware that private information will be used for purposes other than their care. Dr Paul Cundy, Chairman of the General Practitioner Committee IT subcommittee, called for a public campaign to raise awareness of the change in data protection.

His colleague, Dr Chaand Nagpaul, GPC’s lead negotiator on IT, also backed measures to raise understanding of what the changes mean for patients. “We need to be confident that the rights of the public are respected,” he said. “It is vital the public are fully aware that these extractions are taking place. It’s unlikely a website in itself will be enough.”

The benefits of electronic healthcare are widely acknowledged. But will clinicians change to grasp them?

The long-awaited information strategy for the NHS was finally published at the end of May – almost a year behind schedule. Despite the wait, its contents provided no real surprises. Most had heard it all before. But too many in the health service had done little to make sure it succeeded.

The Power of Information is the latest attempt to create a framework to capitalise on the obvious potential of electronic healthcare. It follows in the footsteps of previous efforts to transform the NHS by harnessing the power of information, most notably the failed National Programme for IT.  Much within the latest strategy will be familiar to those who have followed the long and expensive journey to drag the health service into the digital age. It shares many of the same lofty ambitions, drivers and justifications that decorated its predecessors. But crucially, plans to develop a centrally managed national system have been placed in the trash. The ‘information revolution’ is upon us again. This time it needs to work.

Changing culture

Success may largely depend on achieving a seismic shift in the cultural mindset of those at the heart of the NHS.  Traditional GPs and consultants have developed a paternalistic Victorian view of the delivery of healthcare. They have a widespread belief that the whole process is owned and run by the clinician. On the face of it, whilst clinicians understand the benefits of electronic healthcare at a cerebral level, many have a deeply entrenched view that patient data belongs to them and they are unwilling to share it. If the NHS really does want to put the patient at the centre, the whole model of healthcare delivery is going to have to change, and clinicians’ tribal approach to informatics is going to have to change with it. In an integrated care system, building islands of information will only kill off the promise of electronic healthcare.

The strategy

The Power of Information outlines a ten-year framework for transforming information for health and care. It covers healthcare, public health and social care in England. The strategy describes the acknowledged benefits of information and how, in the ‘electronic era’, the ability to access it quickly and securely can positively impact care – for health professionals, commissioners, carers, users of care services and, of course, patients. It lists the following as key ambitions:

• Information used to drive integrated care across health and social care, within and between organisations
• Information regarded as a health and care service in its own right
• A change in culture and mindset, whereby health and care professionals, organisations and systems recognise that information in care records belongs to the individual – and can be accessed easily
• Information is recorded once and can be shared securely across interoperable systems
• Electronic care records become the source for core information to improve care and services, and inform research
• A culture of transparency, where access to high-quality, evidence-based information about health and care services is openly accessible
• An information-led culture where all health and care professionals take responsibility for recording, sharing and using information to improve care
• The widespread use of modern technology to make health/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

The final objective represents a departure from previous attempts to develop a national information system. To succeed, national standards for system interoperability must be agreed to provide local decision-makers with reassurance that their chosen technology will be able to communicate with others around the NHS and care system. The Government believes that if this can be achieved, being able to access, contribute to and share care records will dramatically improve the planning and commissioning of services and help clinicians and care professionals to develop improvement strategies that reflect local need. Moreover, it believes that improving access to quality information will support a patient-centric culture it describes as ‘no decision about me, without me’.

The blueprint draws attention to the importance of mindset change. “The success of this strategy depends as much on a cultural shift – in the way patients, users of services and professionals think, work and interact – as it does on data or IT systems,” it says. “It depends on making the shift to give us more control of our health and care and on recognising that sharing good information is pivotal to improving the quality, safety and effectiveness of our care, as well as our own experiences of care.”

Implications for pharma

A key aspect of the NHS Information Strategy is the notion that patient data can be aggregated, anoymised and shared to help inform strategic decisions about care services. The strategy document highlights that the research and life sciences communities will have access to a greater wealth of information to help drive improvements in health and care.  Whilst the ability to use anonymised ‘real world’ data to guide commissioning, improve services and identify health trends has great potential benefits, the proposal to share it with commercial organisations is a contentious one. Critics already claim that data security within the NHS needs to be strengthened significantly to protect patient privacy. The suggestion of sharing data with the pharmaceutical industry, no matter what the perceived benefits may be, will need some careful PR before the wider public accepts it. But with the ambitious objective to ensure that everyone will have electronic access to their own care records by 2015 – starting with GP records – the opportunity to improve health research using patient data is within reach.

Call to action

The Information Strategy has largely been welcomed by senior figures within the NHS – but with the caveat that success will only arrive if the health service unites to turn the rhetoric into reality. NHS Confederation Chief Executive Mike Farrar said the strategy will bring ‘enormous benefits’ to patient care. “Having access to the right information is crucial for clinicians to make the best decisions for patients, and to improve the safety and quality of care they provide,” he said. “Information systems will help underpin the new system of commissioning and will play an important role in engaging clinicians in the planning, coordination and improvement of local care. Improved data will allow frontline clinicians to understand and address variations in the quality of care they provide and allow them to quickly go to work to bring about improvements.”

But he warned that the strategy would be key to the Government’s reform programme and that, if it didn’t succeed, the reforms would similarly fail. “NHS leaders are acutely aware that previous information strategies have not succeeded and if we try to implement this work in the same way as we have done in the past, we will fail again. The implementation of this strategy needs national coordination but will require local ownership and responsibility. That balance is critical if we are to be successful. There will not be any second chances for the NHS if we fail.”

Rapid advances in information technology, the benefits of which have been realised across most other business sectors, are providing a tremendous opportunity to redesign the model of healthcare delivery in the UK. Despite this, the success of the NHS Information Strategy will depend upon achieving a comprehensive change in mindset. The barriers to progress are not technological, they’re cultural.

The reliability of NHS patient data is declining due to the impact of NHS reforms, according to the NHS Information Centre (NHSIC).

In its first major national report on NHS data quality, the NHSIC found that on average, hospital trusts made errors in 7% of data returns – and in some cases the figure was as high as 20%.

The NHSIC warned that poor data quality can undermine the effectiveness of provider review and hence of GP commissioning.

The report, The Quality of Nationally Submitted Health and Social Care Data for England, drew on sources including NHS workforce data, hospital episode statistics, mental health data, NHS Connecting for Health and the Audit Commission.

The decline in data quality could be attributed to the “reorganisation and reconfiguration of services”, it said – but it also noted poor training, a lack of standards and guidance, and ignorance of the risks of poor data.

The NHSIC called for “local and national action” to achieve a “more consistent and coherent approach”, including an assurance framework to define data quality standards, monitoring and accountability.

The NHS Commissioning Board will set the data standards for commissioners and regulators to enforce through contracts, inspection and licensing.

“High-quality information is essential for effective planning and commissioning,” said NHSIC Chief Executive Tim Straughan. “We want to see providers across the NHS give their fullest attention to ensuring accurate and comprehensive medical and managerial data.

“Each trust has its own summary data quality report which will help them focus on any areas that they need to prioritise.”

The collection and reporting of patient reported outcome measures (PROMs) will remain a standard contract requirement for all providers of certain NHS services for 2012/13 and beyond.

PROMs are a key source of information on the outcomes of hip and knee replacement, varicose vein surgery and groin hernia repair procedures outlined in the NHS Outcomes Framework.

As part of the new arrangements the DH has approved four suppliers of PROMs services to assist providers of care in meeting their obligations.

Bob Ricketts, Director of NHS Provider Transition, said that Capita, Northgate, Picker and Quality Health have been assessed against “rigorous quality requirements”, to ensure they offer a high quality services to the NHS.

To help support NHS organisations meet their new PROMs obligations, the DH has created a the Patient Questionnaire Framework where they can use services offered by the four suppliers.

As part of the framework agreement, there will be greater flexibilities in collecting data at ground level. Suppliers will now be able to offer electronic data and work with other suppliers to collect and report information.

The data will be then be submitted to the Health and Social Care Information Centre’s new PROMs Clearing House service where, to meet demand, clinical teams can access patient identifiable data.

The DH notes that the new approach allows NHS organisations to call off other patient questionnaire services.

“In order to call-off services under the Framework, providers will be required to undertake a ‘mini-competition’,” said Mr Ricketts. “Providers would issue Call-Off Notices to all Suppliers setting out the specification of the services required. All Suppliers are required to submit tenders against the specifications.”

A new UK life science strategy launched by Prime Minister David Cameron aims to create a more favourable environment for industry in which the NHS and life science companies work ‘hand-in-glove’.

The strategy includes measures to improve the implementation of NICE guidance, funding to support early-stage research and plans to make more NHS patient data available for clinical trials.

Industry response has been enthusiastic, with the ABPI and the BIA welcoming the support given to medical research and start-up companies.

However, the plans to ‘open up’ patient data to the private sector have been widely criticised, with the Government accused of undermining patient confidentiality.

Cameron stated that the UK life science industries, which already generate £50 billion a year, can use the expertise of British universities and the rich data resources of the NHS to develop world-leading therapies.

But to achieve this, he argued, the NHS needs to share more patient data with industry and to implement innovative treatments more quickly. “The endgame is for the NHS to be working hand-in-glove with industry as the fastest adopter of new ideas in the world,” he said.

Measures to improve the implementation of NICE guidance include: automatic inclusion on formulary for recommended treatments; formation of a NICE Implementation Collaborative to support uptake; and publication of an ‘innovation scorecard’ to assess the success of guidance in practice.

Stephen Whitehead, Chief Executive of the Association of the British Pharmaceutical Industry, commented that the new proposals “will contribute towards patients receiving better treatments more quickly and build the UK’s attractiveness as a leading hub for medical and health research.

“Specifically, we welcome the introduction of a NICE compliance regime to reduce variation of medicines uptake, increase compliance with NICE technology appraisals, and ensure rapid and consistent implementation throughout the NHS,” he said.

Cameron also announced a new £180 million ‘catalyst fund’ to assist start-up companies in taking innovative medical ideas to the point where they are able to attract private investment.

Glyn Edwards, interim Chief Executive of the BioIndustry Association, praised this measure: “The BIA is very pleased to see the Prime Minister commit to a £180 million BioMedical Catalyst Fund; we look forward to seeing the details of this initiative, and how it will work to support innovative SMEs facing the ‘valley of death’ funding gap.”

However, Dr Glenn Crocker, Chief Executive of life science incubator BioCity Nottingham, noted that the funding would not stretch very far unless it was targeted specifically at early-stage trials.

A more controversial aspect of the strategy is the plan to make GP patient records available to private firms. The data would be anonymised, but the BMA has expressed concern that “large commercial companies” may be able to “search through records and identify patients in order to contact them”.

The Government’s new strategy for life sciences is closely allied to its plans for increased private sector involvement in the NHS – but also, for the first time, includes steps to improve the climate for life science SMEs and for medical innovation in the UK.