Paul Nurse on the value of patient data for research

Posted on June 21, 2012 by


Paul Nurse has a fantastic piece in the Times today talking about the value of the NHS and the need to share patient data to help us do medical research and improve healthcare. This is all part of the Royal Society’s report, Science as an open enterprise, which has launched today and looks at all the different ways science uses and shares data and some of the risks and boundaries of openness, stating that the default position for science should be openness and transparency.

I’m nipping to the Royal Society this evening for a panel event to mark the launch of the report to hear Sir Mark Walport, Director of the Wellcome Trust, and Peter Knight, who heads up research information and intelligence at the Department of Health, share their thoughts.

This is all very timely for health research as lots of work is afoot to make it easier for researchers to access data and patients to be involved in research – all announced in the government’s Life Sciences Strategy in December 2011.

This includes the Clinical Practice Research Datalink (CPRD), which links up patient records from GP and hospital care, allowing researchers to access the information in an anonymised form.

The government are also planning a consultation to ask the public whether they would be happy to move to a default assumption that NHS patient records can be used for approved research, and be approached about research studies which they may like to take part in. We’re expecting this in early autumn.

And they have asked Dame Fiona Caldicott to review the balance between protecting patient information and its sharing, to improve patient care. This will include how researchers can access patient information and should help to clarify how different types of data should be handled.

EU Data protection laws are also being updated which will have implications for health research – a committee of the European Parliament is looking at this in the autumn – more about this here.

And the Hargreaves review of intellectual property recommended changes to copyright law to make it easier for researchers to use new data-mining techniques to combine published data to ask new, more complex questions. There is an Early Day Motion which MPs are signing in support of these changes.

The All Party Parliamentary Group on Medical Research are holding their summer reception in July all about data, bringing lots of researchers in to parliament to show parliamentarians how they are using data in all sort of different ways to better understand the cause and frequency of conditions and find the most effective way to care for people affected.

Posted in: Policy