Epidemiology of blood cancers
We are supporting a unique project that provides a detailed picture on how often blood cancer occurs in different groups of people and why. Led by Professor Eve Roman at the University of York, the Haematological Malignancy Research Network (HMRN) collects detailed data on people living with blood cancer in Yorkshire. By harnessing this rich data, the HMRN provides high quality information on rates of blood cancer in the UK. It also provides a resource to answer questions about health service provisions for people living with blood cancer.
How does it work?
Spanning the whole of Yorkshire, the HMRN draws together researchers from the University of York, hospitals, and the central diagnostic service at St James’s Hospital in Leeds. HMRN collects data on every single person with blood cancer, who is being seen at one of the 14 hospitals in the area. Information includes: details on symptoms, how their cancer was diagnosed and what type of cancer they had, what treatment they had and how they responded, and if there were any follow-up appointments. One central diagnostic service at St James Hospital performs every test, so HMRN is able to collect all of their laboratory data quickly and accurately. Researchers are also able to obtain additional information through surveys, such as height, weight and lifestyle.
And HMRN doesn’t just collect data about individual people with blood cancer. They also pull in national health data and population data from sources like the UK census, so they can overlay information such as socio-economic status onto the information they have about individual people with blood cancer. This helps them to provide richer data that people can do even more with.
Because Yorkshire’s population has a similar mix of age, gender, ethnicity and socio-economic status as the UK’s as a whole, HMRN’s findings provide a picture of how blood cancer affects people right across the UK.
Bringing data into the real world
Since the HMRN was established with Bloodwise funding in 2004, we have collected data from over 20,000 people living with blood cancer.
Insights from HMRN have been used to:
- find out what types of person respond best to a particular treatment
- tell doctors which treatment paths are likely to bring the best outcomes for different people
- find out if one type of person is more likely to get blood cancer than others
- identify issues in symptoms guidelines used by GPs when they're deciding whether to refer a patient to a specialist
- identify subsets of the population where symptom awareness is low, leading to later diagnosis and poorer outcomes
- identify links between socio-economic background and survival rates, which could be associated with some groups of people adhering to their treatment regimen better than others
- highlight areas where we need to do more research into better treatments and improved diagnostic tests
You can explore some of this information yourself by vising the HRMN website at: https://www.hmrn.org/home