NHS Constitution to opt data into trials

Prime Minister David Cameron

Prime Minister David Cameron has said the government wants to change the NHS Constitution so patients will have to opt-out of having their data included in research trials.

Speaking at a Global Health Policy Summit in London yesterday, and giving a speech intended to promote Britain’s life sciences industry and business opportunities, Cameron said he wanted to see the NHS and its data exploited as a resource.

“Drug development relies more and more on real-time data. The UK is going to be a world leader when it comes to making this kind of data available, and we’re going to do this by harnessing the incredible data collected by our National Health Service,” he said.

“We are about to consult on changing the NHS Constitution, so that the default setting is for patients’ data to be used for research unless the patient opts out.”

Alongside its Open Data commitments to make more publicly collected data available to the public and public service users, the coalition government has said repeatedly that it wants to make more data available to companies to promote British industry.

In December, campaigners said the government’s plans for NHS data would herald the “death of patient confidentiality” after another speech in which Cameron unveiled plans to create a new service to link anonymised hospital data with data from primary care.

Then, he said the government would spend £60m with the Medicines and Healthcare Products Regulatory Agency on developing the Clinical Practice Research Datalink.

The government has also announced initiatives to make more use of data in developing treatments and health services.

The Health and Social Care Information Centre is also working on a project to link hospital and primary care data sets, which is aimed at driving innovation in health and social care.

And today four centres of ‘excellence in electronic health research’ were announced, with £19m of funding.

A partnership of ten government and charity funders will establish the centres in London, Manchester, Dundee and Swansea, which will aim to undertake research by matching electronic health records with other data.

A range of health conditions will be investigated, such as diabetes, cardiovascular disease and cancer, with the aim of identifying more effective treatments, improving drug safety, assessing risks to public health, and finding other causes of disease and disability.

Professor Sir John Savill, chief executive of the Medical Research Council, said: "This is a watershed moment for data research and for the Medical Research Council.

"The way in which the partner organisations have come together to invest in e-health underpins its importance and will help establish the UK as a world leader in this field."

In yesterday’s speech, Cameron also highlighted a number of other initiatives that the government is undertaking in the health and life sciences space.

These include an ‘early access’ scheme to give patients with no other treatment available to them early access to innovative medicines and a biomedical catalyst fund to help start-ups get off the ground.

A new Phenome Centre for research into the biological markets of health and disease is also being created, based on the lab set up to drug-test athletes during the Olympics.