NHS open data plans 'death of privacy'

David Cameron

Privacy groups say a government plan to share anonymised NHS data with commercial companies will herald the “death of patient confidentiality”.

Prime Minister David Cameron is due to give a speech this afternoon unveiling plans to boost the UK’s life sciences sector.

According to wide-spread coverage of his speech, these will involve a new service, developed by the Medicines and Healthcare Products Regulatory Agency, that will link anonymised hospital data with data from primary care.

The government is to spend £60m developing the Clinical Practice Research Datalink. It is not clear whether companies will pay to use it.

The new service is separate but complementary to another new secure data service developed by the Health and Social Care Information Centre (NHS IC) and announced in last week’s Autumn Statement.

The NHS IC service will also link hospital and primary care data sets, but will be aimed at organisations and researchers looking to drive innovation in health and social care. It will be self funding.

Cameron will say today that the CPRD will support the life sciences industry and deliver benefits for patients, by giving them earlier access to the benefits of research.

It will see the NHS working “hand in glove with the industry as the fastest adopter of new ideas in the world.”

The idea will be promoted hard in London, where three academic health science centres have signed a concordat with NHS London and the mayor to "maximise the economic impact of London's life sciences sector."

The three AHSCs at Imperial, King's and UCL, say that as a priority they will "explore the potential to develop an informtion system that will build on the NHS record and pull together patient-level data for London's population."

In a statement, they said this would "enable large groups of patient to be engaged in world-class clinical research on disease specific and personalised treatments" while driving innovation and growth.

However, Roger Goss from Patient concern said the government plan would mean the “death of patient confidentiality”.

“There is no guarantee that information will be anonymised; in any case, anonymised data can just as easily be re-identified.

“We understand GP surgeries will have the right to refuse to release their patients’ records, but whether patients will ever be told what is happening, let alone have the choice to protect their privacy, is still unclear.”

Privacy groups are unlikely to be re-assured that the government will opt patients into the new database.

Big Brother Watch director Nick Pickles said the life sciences plans could do “untold damage to patient confidence in the NHS.”

He said personal information was not adequately protected under the current system and data protection in Britain required “urgent strengthening” before anything resembling the policy could be considered.

A DH statement confirmed that all data made available would be de-identified. “We will continue to see how we can further strengthen the approach to patient confidentiality and will monitor any concerns raised under the Data Protection Act as we implement our plans.”

The life sciences sector employs more than 160,000 people in the UK and has an annual turnover of £50 billion, but is struggling in some areas such as attracting clinical trials.

The BBC reported that Britain’s global share of clinical trials fell from 10% in 2000 to 1.6% in 2010.

In April, the Guardian exposed Whitehall documents detailing a “programme of ministerial visits” to prevent drug companies leaving Britain.

The relationship had been hurt by a government drive to force the companies to cut the cost of medicines sold to the NHS.

The report quoted health minister Mike O’Brien as saying the government was determined to “do what it takes to make the UK the location of choice in Europe for biopharmaceutical industry activity.”

The government’s Open Data plans, which include the CPRD link, were developed in collaboration with a number of companies including GlaxoSmithKline.

This story has been updated as the government has issued a number of reports in connection with its plans.