NHS patients' health data to be anonymised and shared

The government's NHS Information Strategy sets out plans to enable the reuse of data and give patients access more access to their health details online

The government has finally released the long-awaited NHS Information Strategy.

The document, initially set for release last year, was launched on Monday and paves the way for the anonymisation and reuse of patient data.

"Our electronic care records [are] becoming a core source of all professional information. These records are a rich source of information on quality and outcomes. When combined and made available in anonymised form, this will support a shift to measure and reward quality and clinically meaningful outcomes for care and health," the strategy document says.

According to the strategy, "meaningful" information and evidence on outcomes will be routinely captured in future by health and social care workers, and used as a source of business intelligence. The information will then be used for research and to improve health systems.

The NHS and social care must use IT systems to share data about service users electronically — and develop a consent model that safely facilitates this.

– NHS Information Strategy

From April 2013, the Health and Social Care Information Board will be charged with the collection, secure linking, storage and publication of the data.

In advance of the information reuse scheme going live, the government has commissioned a review of information governance arrangements "to ensure that there is an appropriate balance" between protecting individuals' personal health information, and using the information to improve public health. The independent review will be led by Dame Fiona Caldicott and will report later this year.

The strategy also sets out plans to give patients the ability to book GP appointments and get access to their information online.

Under the strategy, NHS patients will "in time" be able to get digital copies of their referral letters, contact healthcare professionals electronically for routine support, and see their records and other information online or on mobile devices.

Online access

The strategy's first step will be allowing patients to access their GP records and test results online. Health organisations will now be charged with setting out a timetable for when their patients can expect web access to their records ahead of a 2015 deadline.

While over half of GP practices have the IT infrastructure to offer such a service, only one percent currently do so, the strategy says, while 70 percent have systems that are able to offer online appointment booking, but only 30 percent make the functionality available to patients.

"The NHS and social care must use IT systems to share data about service users electronically — and develop a consent model that safely facilitates this. How this is achieved should be for individual providers to decide, but with common standards. The key requirement is interoperability — IT systems talking to each other — including the adoption of the NHS number across health and social care," it adds.

Minimum information standards to facilitate data sharing among NHS IT systems, to be developed by the Department of Health and the NHS Commissioning Board, will be phased in over the coming 10 years.

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