Saturday, October 27, 2012

It'll end in tears

NHS patient data shared with industry

Since March academics and private companies from Britain, Europe and North America have been allowed access to patients' anonymised hospital and GP records through the Clinical Practice Research Datalink (CPRD).

Experts say that widening access to large-scale medical data will allow more precise monitoring and faster delivery of new drugs, but opponents are concerned the scheme risks patients' privacy.

Officials said last week they had so far received 78 applications for patient data, and had issued information to 18 of Britain's 20 largest drug companies as well as domestic researchers and those in the USA and Canada.

The new system allows the linking of patients' hospital records with GPs' notes to give a broader overview of patients' health and lifestyle, which could yield new evidence about particular treatments or health risks.

Currently all NHS hospital data is available to researchers, along with records from around a quarter of GPs' surgeries, in anonymous form. Patients have the right to opt out if they wish.

Over the next year the scheme will be expanded to include data from social care and other sources, such as supermarket clubcards which could help researchers draw new links between people's health and their diet.

Researchers say the NHS puts Britain in a unique position to provide large-scale health records and speed up research, and David Cameron has signalled his intention for every NHS patient to become a "research patient".

Dr John Parkinson, Director of the CPRD, said: "If you better understand disease data, you can better and more quickly target areas of research – and better understanding comes out of the data.

"As we get more and more data we move the UK into a situation where it is possible to nearly track everybody as they take a new medication ...[it is] possible that we could allow medicines onto the market a little bit earlier because we can track them."

But opposition groups remain concerned that linking patients' hospital, GP and other records together could make it easier to identify individuals if the information fell into the wrong hands.

Roger Goss, co-director of Patient Concern, said: "Our objection is that this is being done without patients' knowledge or permission. Patients' records are about as sensitive, and therefore confidential, as it gets."

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