The Department of Health’s NHS information strategy, released last week, blazes a trail for other government departments by outlining the department’s approach to using open data as a way to improve service delivery. Although the strategy (see box) doesn’t envisage giving people new rights to access data currently kept out of the public domain, it does require NHS service providers to improve the way they collect, hold and release information – with the intention of improving patients’ experiences, providers’ performances, and the opportunities for private companies. The challenges facing those implementing the strategy will provide lessons for the rest of government, and help shape the future of the coalition’s open data initiative.
Patient choice, the policy mantra of successive administrations, is a key strand running through the 115-page document. Patients already have the right to request access to their medical records, but the process can be costly and time-consuming. The strategy sets the ambitious target that patients should have secure, online access to their general practice records, including test results, by 2015. Information from other health service providers is set to come on stream as their systems are adapted.
The government believes that providing online access to medical records will improve health care and empower patients to make better-informed choices about their treatment. Health secretary Andrew Lansley says: “By pushing ahead with our information revolution, we will ensure that every NHS patient will be able to say that ‘no decision about me was made without me’.” Meanwhile, by aggregating this medical record data, the government hopes to find ways of comparing the quality of service offered by rival providers.
This push has received a general welcome from health professionals. However, Veena Raleigh, senior fellow in health policy at charity the Kings Fund, points out a potential tension with another government policy aim: outsourcing service provision to private and third sector organisations. While such contractors are required to provide some core datasets – MRSA infection rates, for example – they are excused many others; and even where publication is mandatory, compliance is variable. “Most of the private providers do not employ staff to specifically deal with data, and nobody on the government side is monitoring them effectively,” says Raleigh. “When the last government contracted out some services the quality of data these bodies returned was often erratic and of poor quality.”
As contracting-out grows, then, NHS bodies may find themselves carrying greater data management burdens than their private sector rivals, and variations in data publication standards between different providers could weaken the transparency so essential to the government’s plans for greater competition. “There is not a level playing field in data provision between the NHS and private firms providing services on behalf of the NHS at the moment,” comments Raleigh.
Another key aim of the strategy is to simplify data collection, moving away from the current situation where much aggregated data – used by managers to form strategic policy and to measure effectiveness – has to be gathered from manual trawls of records. The strategy proposes that information should now be recorded just once by frontline staff, using centrally-defined information categories. This data will be easily accessed by managers using software which can aggregate and anonymise it.
The strategy’s authors hope that the release of this anonymised NHS data will unleash a wave of innovation among private and third sector firms, which will be able to use it in medical research or create applications to present the data in useful ways. Roger Taylor, director of research and public health info providers Doctor Foster, says an industry is already emerging in the production of software that uses data to guide and inform NHS managers. However, he adds, “what is less clear is whether there is a huge appetite in the market to provide comparative information applications to patients.”
Ollie Hart, head of public sector at internet security firm Sophos, is excited about the strategy’s potential. He warns, though, that opening up patient data will present major privacy and security challenges. He backs the strategy’s proposal that patients’ NHS numbers be used as an identifier on all relevant data – enabling healthcare professionals to pull together data held on an individual by different NHS organisations and contractors – but points out that there are also dangers: “If someone gets hold of your [NHS number], then they could get hold of all the information about your medical history.” Dr Laurence Buckman, chairman of the British Medical Association’s GPs committee, adds: “It would be important to be certain that it couldn’t be [accessed by] an abusive partner, or a parent trying to access their teenager’s records”.
Giles Wilmore, director of quality framework and information strategy at the Department of Health, says privacy and security are top priorities. But he points out that patients have little to fear from the prospect of sensitive medical data being stored and shared online. “It is no different from banking or any other transaction that you do on your computer,” he says, citing research by the NHS Future Forum that found that the current culture surrounding personal data is too risk-averse. A culture change is needed, Wilmore argues: “Not sharing information has the potential to do more harm than sharing it.”
Another challenge to implementing the strategy is creating the standardised data sets which all NHS providers will be required to collect. A system for hospitals already exists, according to Raleigh, but “GPs currently don’t have one: they record a great volume of information that will all need to be standardised, which is a complex task.” The DH says it will work with major national health bodies to thrash out these standard data requirements.
Many of those interviewed by CSW point out that the strategy’s impact on service delivery will in part rest on the amount of money available to implement new systems. IT provision will no longer be centrally commissioned, and the strategy promises that central funds will be passed down to the local level once the current national IT contracts begin to wind down in 2016. Wilmore points out, however, that it is impossible to say how much money this will provide for new data systems and staff in the next spending review period, from 2015.
“In the current economic environment there will be difficult choices to make,” says Raleigh. “The new commissioning boards will face difficult choices between investing in NHS IT and in frontline services.” But Wilmore is convinced that incentives will exist to encourage commissioning bodies to spend on data management and IT systems. “Investing in technology will result in significant cost savings, along with service improvements,” he argues. “Not all interactions have to be done face-to-face, and these systems will free up the time of frontline professionals.”
Mike Sinclair, vice chair of professionalism in the health division of BCS, the chartered institute for IT, welcomes the direction of travel outlined in the strategy, but warns that in order to deliver real value from the data and improve service delivery, there must be strict monitoring of the quality of the data being provided. “You can’t just create a structure and ask people to do it,” he says. “That way lies chaos, and it becomes unworkable and useless.”
Wilmore, though, says that the department will ensure that the data collected is of genuine use to medical practitioners, helping them to do their jobs better. The strategy won’t require the recruitment of a new army of officials to oversee information-gathering and publication, he says; instead, medical staff and healthcare strategists themselves will understand the value of making this agenda work, ensuring that accurate, good-quality data is collected – and that it’s then used to improve the medical care received by millions of Britons.
NHS Information Strategy: key points
- Create a single comprehensive online ‘portal’ – provided by government from 2013 – to present information on health, care, support services and public health;
- Move away from a national NHS IT system to locally-commissioned systems;
- Give all NHS patients secure online access to their personal GP records by 2015;
- Ensure that all GPs make available electronic booking and cancelling of appointments, and ordering of repeat prescriptions, by 2015;
- Introduce systems to ensure that medical information is recorded only once – at first contact with professional staff, and using nationally-defined data standards – and shared securely between healthcare providers.