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Around three million people in the UK have kidney disease

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Yesterday the Government published its response to the National Data Guardian for Health and Care Review of Data Security, Consent and Opt-outs. Kidney Research UK welcomes the fact that the Government has accepted all of the National Data Guardian’s recommendations. We are pleased to see the Government will be introducing a system which will implement strong data security standards in the NHS and help patients understand how information about them is shared, so they can make an informed choice about whether to share their data.

We believe that a joined-up approach to health data is essential to improving healthcare and to supporting research. With the appropriate safeguards, this in turn will enable a better understanding of diseases leading to potential treatments and cures.

Being able to draw insights from large amounts of anonymised data is vital in diseases such as kidney disease. The more we can learn about the early stages of chronic kidney disease (CKD), the more we can do to slow or halt progression of the disease and prevent more people from experiencing kidney failure. Analysis of patient data will be a powerful tool for better understanding the risks and adverse outcomes associated with CKD. For rarer renal diseases we need to be able to collect as much data as possible to enable us to describe the patient course and outcomes. This will be powerful in enabling further research into the development of new therapies. This would have obvious health care and downstream health-economic benefits for the NHS.

Kidney Research UK has been following this issue closely, and contributed to the Dame Fiona Caldicott’s (the Data Guardian) review on data security and data sharing in the health and social care system. We provided several case studies on the power of kidney health data in research and were pleased to see that one of these, a previous study by Dr James Fotheringham, was profiled in the Government’s response document. James’ work looked into the pattern of hospitalisation of patients undergoing dialysis and linked patient data from the UK Renal Registry with Hospital Episode Statistics data.

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