Why was this work needed?
Blood cancer is the UK’s fifth most commonly diagnosed cancer and the third deadliest cancer. In order to improve how this condition is diagnosed and treated, it is vital to understand as much as possible about it.
The Haematological Malignancy Research Network (HMRN) collects detailed data from every person with blood cancer in Yorkshire. It is a collaboration between researchers from the University of York, 14 hospitals and one central diagnostic service at St James’s Hospital in Leeds.
Data from the HMRN is used by doctors, researchers and health service planners to gain greater insights into blood cancer and to improve the diagnosis, treatment and health service provisions for people with this condition.
The population in Yorkshire has similar patterns of age, gender, ethnicity and socio-economic groups as the UK as a whole, therefore insights gained from the HMRN provides a picture of how blood cancer affects people right across the UK.
What are the benefits?
This is particularly rich and comprehensive data. Work using the HMRN is ongoing, but there have already been a range of important findings. The data has been used to identify the people that respond well to particular treatments, allowing doctors to tailor their approaches more effectively. Researchers have highlighted areas that are in need of improved treatment and diagnosis. Issues were also identified with the symptoms guidelines that GPs use when they are deciding whether or not to refer a person to a specialist.
What type of data is involved?
The HMRN collects detailed diagnostic and treatment data through the hospitals and diagnostic centre. Other information is obtained from patient surveys, such as height, weight, lifestyle, quality of life, and symptoms and events in the time leading to diagnosis. Hospital Episode Statistics (HES), Office of National Statistics (ONS), cancer registry data, as well as census and other national data also feed into the HMRN.
What is the legal basis for accessing the data?
Clinicians from the 14 participating hospitals as well as the diagnostic centre contribute the detailed diagnostic and treatment data. Data coming from NHS Digital, for example HES data, is covered by Section 251 of the NHS Act 2006. Patients also actively contribute their own data through questionnaires and surveys.
Who funds and collaborates on this work?
The HMRN is funded by Bloodwise.
Where can I go for more information?
- Page updated: 26 June 2018
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