Datalink to support UK life sciences

The government has launched a “world-class e-health secure research service” that will provide life science researchers with greater access to anonymised NHS patient data.

Ministers argue the Clinical Practice Research Datalink will help to improve public health by helping researchers to gain a better understanding of the causes of conditions like cancer and diabetes, develop new treatments for patients, and attract investment to the UK’s life sciences sector.

Hosted and managed by the Medicines and Healthcare Products Regulatory Agency, the new service combines the resources of the General Practice Research Database, which has been collecting anonymised medical records from primary care since 1987, and the Research Capability Programme piloted by the National Institute for Health Research for the past four years.

David Willetts, minister for universities and science, said: “The UK is a world leader in life sciences, but both the research base and industry tell us that we could make better use of data in order to drive medical breakthroughs.

“The CPRD will provide researchers with access to safeguarded data that respects patient confidentially. This will give valuable insights into serious health conditions and ultimately reduce the time it takes to develop new treatments.”

The research link will be delivered incrementally over the next four years and will be “separate but complementary” to another new secure data service developed by the Health and Social Care Information Centre, which links datasets from GP and hospital care.

Prime Minister David Cameron pledged to spend £60m on the service in December last year as part of the government’s ‘Plan for Growth’, which aims to boost the life sciences industry and improve the international competitiveness of the UK economy.

Health minister Lord Howe said: “This is an exciting and unique resource which will be of huge value to researchers as they develop new treatments to the benefit of patients right across the NHS.”

The CPRD will build on the current support for researchers already in place across a number of areas including data, research and interventional research services.

EHI asked whether the service would be running an information campaign for patients, whether they were able to opt in or out of the database, and how their wishes were flagged on their records.

In response, a spokesperson said: "The CPRD has a public, patient involvement programme that will help patients and patient groups understand the public health benefits of the research that CPRD enables.

"Patients can discuss their concerns with their GP and they will also be informed by posters, leaflets at GP surgeries and online content that their anonymised data may be used for research.

"If they do not wish this to happen they inform their GP and data is not available to CPRD.

"As there are a number of systems that could use the opt-out Read code, CPRD uses a specifically applied opt-out marker specifically set into the IT system."

The spokesperson said the CPRD was also working on a new linkage methodology that will enable a centralised approach to an opt-out from the use of any linked data.