Patient data is vital for the research done here at The Institute of Cancer Research, London, whether it’s investigating the causes of cancers, analysing genetic information, or conducting clinical trials of potential new therapies.
Today, The Institute of Cancer Research (ICR) has joined over 40 medial organisations including the Wellcome Trust and Medical Research Council, to support a new campaign highlighting the importance of health data in research. I wanted to share with you some details about the campaign and what it's all about.
The campaign follows announced changes to how patients’ records in England are stored and accessed. From Spring 2014, patients’ GP records will be entered into a central NHS database
, giving researchers access to patients’ health records in a non-identifiable form. Patients can choose not to have their data shared through this scheme if they wish.
As part of the project, a new website www.patientrecords.org.uk
has been launched, highlighting the value of health records for research, as well as providing information explaining the changes to how patient records are handled and links to further information from the NHS.
The health records are incredibly valuable for research institutions like the ICR. In the campaign press release there was a great quote on this from the Director of the Wellcome Trust, Dr Jeremy Farrar: “The NHS is a unique and incredibly valuable resource for research, providing insights that just would not be possible without such large and comprehensive sets of data. With the correct and necessary safeguards in place to assure public confidence, our patient records will provide a rich source of important data that can help researchers develop much needed treatments and interventions that can improve and even save people’s lives.”
The campaign sets out to highlight this point that research using patient data really does make a difference to patients both now and in the future. I was pleased to see that the new site highlights the work of the ICR’s Professor Tony Swerdlow
into breast cancer risk in patients treated for lymphoma as one of the examples of how researchers use patient information to save and improve lives. You can read more about this work here
, as this project was also selected in December 2013 as one of the ICR’s most exciting discoveries of the year.
Let's hope that this move to increase access to patient data for research makes a real difference to the future of cancer prevention and treatments. Highlighting why health records are so valuable to researchers is an important first step.
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