NHS To Publish Anonymised Patient Data

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The long-delayed Department of Health information strategy plans to release anonymised patient data to researchers, industry and the public

The Department of Health has released its delayed information strategy document, laying out a vision for an integrated health service designed around the collection, analysis and sharing of patient data.

The free exchange and use of data drawn from care records is at the centre of the strategy, which paves the way for care data to be reused, in anonymised form, not only within the health service but also by researchers, industry and others.

Online availability

The strategy sets a 2015 deadline for all patient records to be available online, and also lays out plans for mobile apps, online bookings and automation of repeat prescriptions.

Breaking with the approach of the previous NHS National Programme for IT (NPfIT), which was cancelled in 2010, the strategy does not look to impose centralised information systems across the NHS, instead looking to support “local decision-making, within a framework of national standards”.

To promote data reuse the Health and Social Care Information Centre is to set up a secure data linkage service and a specialist data service for research and life sciences, according to the document, titled “The power of information: Putting all of us in control of the health and care information we need”.

“The Health and Social Care Information Centre will become the focal point for nationally collected NHS, public health and social care information in England,” the document states. “A multitude of organisations and systems will be able to use this data in a variety of different ways to improve experiences of care, choice and outcomes.”

The plan contrasts this focus on clinical data with the NHS’ current reliance on data limited to “activity and finance”.

“Over time more clinically relevant data will become available for a wide variety of uses because the source data derives from people’s care records,” the document states.

The data collected will be made publicly available, after measures have been taken to protect privacy, according to the strategy.

“The Health and Social Care Information Centre will publish (subject to certain exceptions) the information it collects,” the document states, noting that the data will be “aggregated and anonymised so that we, as individuals, cannot be identified”.

Wider data collection

Data collection will also become more pervasive, with data to be collected and shared by “all health care professionals”, as well as bodies such as local councils.

While patients should benefit by having access to more data, the wider sharing of clinical information is also intended to create economic benefits for UK research and industry, the strategy states.

“The ability to draw upon a wealth of linked, then anonymised, data from these invaluable services to improve health and care – when coupled with other resources such as the UK Biobank – will serve to reinforce this country’s reputation as a global centre for health and care data and research,” the document states.

The strategy calls for clinical data to be combined with other sources, such as vital statistics, demographic trends and information on health risks in local communities, to allow the creation of local health strategies that can be reviewed by the public.

Privacy protection

The Department of Health acknowledged that in a system that allows clinical data to be so widely collected and distributed, protection of patient confidentiality is a concern. The document acknowledged, for instance, that in many cases patients can be recognised by their medical history, even when many identifying elements have been removed.

“The level of granularity of data to be released needs to be reviewed carefully on a case-by-case basis for each dataset,” the strategy document states.

The British Computer Society (BCS), while praising the strategy’s focus on the wider use of digitised clinical data, argued that the document does not go far enough. It called for “clear obligations on hospitals to digitise their patient records and open these to scrutiny by patients”, as well as an “appropriate regime of penalties and sanctions” to enforce data protection standards.

In the absence of standardised top-down healthcare systems, interoperability standards will be key for enabling data reuse, according to the BCS.

“The NHS information strategy should have gone much further in setting out the strategy for interoperability standards emphasising reuse of globally-utilised, supplier-driven standards and establishing a vision and strategy around accreditation and certification of systems to those standards,” the BCS stated.

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