Mil Vukovic-Smart
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Leukaemia & Lymphoma Research backs patient data sharing campaign

Mil Vukovic-Smart
Posted by
14 Jan 2014

This month we are proud to be supporting a campaign by the Association of Medical Research Charities, Wellcome Trust and over 40 research charities highlighting the importance of sharing patient data for medical research. The campaign coincides with the NHS's initiative to start collecting data on patient care by GPs which will help provide a full picture of disease and treatment patterns.

The NHS England leaflets explaining the scheme, and how people can opt out if they wish, are being sent out now to 22 million households in England. You might have got one through the post already!

We know that sharing patient data significantly enhances research opportunities.  The charity has supported the Haematological Malignancy Research Network (HMRN) since it was established in 2004. The HMRN is collaboration between the Epidemiology & Cancer Statistics Group (ECSG) at the University of York and the Haematological Malignancy Diagnostic Service (HMDS) based at St James's Institute of Oncology, Leeds. The network was set up to provide robust data to inform research and clinical practice. It captures information on all blood cancer patients diagnosed in the Yorkshire and Humberside region, following them for the entire length of their cancer journey.

Yorkshire was chosen as the home for this very special research programme for a very special reason. Yorkshire’s population make-up matches UK demographics as a whole more closely than any other region in terms of age, gender and ethnicity – meaning that HMRN’s findings have national relevance and can go on to improve the lives of blood cancer patients right across the country – and the world.

But more unusually, HMRN also follows each and every blood cancer patient for the entire length of their cancer journey, allowing us to link clinical outcomes with particular demographic groups. They document each minute detail of each patient’s clinical treatment at every hospital in the region, allowing us to build up a complete map of what works – and importantly for who – when it comes to treating blood cancer.

During the programme’s first five years, data was collected and analysed from more than 10,000 patients. This has provided cutting-edge and highly valuable insights into routes to diagnosis, disease progression, responses to treatment and survival rates.

The HMRN would not be possible without sharing patient data. The discoveries made will spark new avenues of research and have the potential to influence the design of new drugs and diagnostic tools. It can set a paradigm for the management of cancer patients, as well as patients with other serious diseases.

That is why Leukaemia & Lymphoma Research is among those charities backing the changes in sharing health records from GPs and urging patients not to opt out.

Further information about the campaign and how sharing data save lives can be found here.  

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