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Anonymised data of all NHS treatments must be put in public domain by 2015, strategy says

BMJ 2012; 344 doi: http://dx.doi.org/10.1136/bmj.e3648 (Published 22 May 2012) Cite this as: BMJ 2012;344:e3648
  1. Michael Cross
  1. 1London

Anonymised data concerning every NHS treatment carried out in England—extracted from patients’ records—will be put in the public domain within three years under a long awaited information strategy for the NHS published this week.1

The strategy also commits the NHS to offering all primary care patients access to their health records on the internet and the ability to book appointments and obtain repeat prescriptions online.

The BMA said that the strategy “contains positive improvements which should benefit patients” but called for more detail and warned of threats to patients’ confidentiality.

The information strategy, published by the health secretary, Andrew Lansley, on Monday 21 May, is the fourth major attempt in 20 years to use information technology to join up NHS services. Unlike its predecessors, however, it extends to local authority social care as well as NHS services.

It is also the first strategy to state that patients need access to their own records and other electronic data, so that they can pick services, manage their care, and correct inaccurate data.

As expected, the 10 year strategy claims to mark a clear break from the troubled national programme for IT in England, which sought to create joined-up electronic health records through a £13bn (€16bn; $21bn) programme of standardised, centrally procured computer systems. Instead it “signals the move towards a localist approach—encouraging diversity and innovation at a local level.” From 2016, when the national contracts wind down, “the balance of funding and responsibility for IT will increasingly become local.”

Despite this commitment the strategy concedes that national IT systems, such as the data “spine” connecting NHS organisations, will still be needed. The strategy also promises a new “single, trusted health and care [web] portal” through which patients can interact and a powerful role for the NHS Information Centre for Health and Social Care.

The strategy pledges to make mandatory the use of the 10 digit NHS patient identifier number, which successive governments have been trying to implement since 1992. It suggests that patients should “become increasingly aware” of their own NHS number and be ready to quote it in care settings.

Following a Conservative party manifesto pledge, the strategy promises to allow patients online access to their health records, setting a deadline of 2015. It says that although over half of general practices have IT systems capable of providing access to records, less than 1% actually offer the service.

It also foresees near universal online booking of appointments and ordering of repeat prescriptions. Seventy per cent of practices have systems that allow online booking of appointments and ordering of repeat prescriptions, but only 30% of practices offer the service, it says.

The document emphasises that, unlike other public services that are being designed to be “digital by default,” the NHS will be “digital first.” “Digital by default” is the government’s policy of forcing people and businesses to deal with government services online, by making it hard or impossible to deal with them in other ways.

The strategy is coy on the cost of making the strategy happen. It says that a capital fund is being developed to cover 2013-15 but says that details will not be available until later this year.

It is similarly coy over the most contentious proposal, to amend the NHS constitution to make it easier to reuse data held in patients’ records. A section on information governance says that the NHS Future Forum’s consultation “received a clear message that not sharing information has the potential to do more harm than sharing it” and that data held in health and social care records “is a valuable source of information, which can be used for the benefit of wider society, as well in personal care.”

To deal with the issue of informed consent for reuse, the strategy proposes a “rights and responsibilities” consent deal for the NHS and patients, including a promise “to take all reasonable steps to protect your confidentiality.” Details will be given in the report of an independent review led by Fiona Caldicott, to be published “later in the year.”

Notes

Cite this as: BMJ 2012;344:e3648

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