What are YHHN's key activities?
- Data collection on all patients with blood cancers or blood disorders in the study area.
- Data analysis to learn more about different blood cancers, blood disorders and treatments, and how they affect people differently.
- Clinical audits to ensure all patients are treated according to the latest national guidelines.
What data and samples do we collect?
- Relevant data from medical records about the blood cancer or blood disorder (e.g., test results, treatments, response to treatment).
- Data from NHS Digital on medical conditions and clinical care (Hospital Episode Statistics (HES), Office for National Statistics (ONS), Cancer Registries).
- Data from patients themselves about their lifestyle, symptoms before diagnosis and quality of life (using questionnaires).
- Blood and tissue samples left over from tests carried out at diagnosis.
- Clinical data from the members of the general population who do not have blood cancer or a blood disorder (HES).
You can find out more about the information we collect on our linked HMRN website and learn more about our Fair Processing.
What do we do with the data?
- Answer important research questions and complete audits (e.g., who gets blood cancers, how are they treated, do new treatments work?).
- Provide the National Institute for Health and Care Excellence (NICE) with treatment data so they can make decisions about which drugs to approve.
- Calculate treatment and healthcare costs, which could be of benefit to the NHS managers who organise care and allocate resources.
- Compare the health of people with blood cancers and blood disorders to the general population.
Case studies showing data use
Mantle cell lymphoma: from audit to NICE drug approval
Survival outcomes in diffuse large B-cell lymphoma
Governance
Governance measures are in place to ensure no individual can ever be recognised from our data. Detailed summaries can be found in the Factsheets and Statistics pages on the HMRN website, where data are based on large groups of patients rather than showing what might happen to individuals.
Consent for key activities
We work alongside the NHS doctors and nurses in the area to obtain patient consent for data collection. Inpatients are generally given an information pack by a member of the hospital team, and outpatients are mailed the same pack on behalf of the hospital team. Patients can now consent to the study online, following the instructions in their pack.
It is very important that information is collected from everyone in the study area with a blood cancer or blood disorder so our findings reflect the UK as a whole. As it is not possible to ask some patients to consent, YHHN has Section 251 support, which allows us to legally collect the data we need without consent.