What are YHHN's core activities?
The Yorkshire and Humberside Haematology Network's (YHHN) core activities include research and clinical audits that aim to increase what is known about blood cancers and related disorders. This is particularly important because there are so many different types of these diseases, along with a wide range of treatments that affect people in different ways. We hope that learning more about them will lead to improved patient care in the future.
YHHN collects information on all patients diagnosed with blood cancers or related disorders in the study area - around 4 million people served by 14 hospitals. As we include all patients, this ensures our findings tell us about the whole population of patients with these diseases in the study area. Furthermore, since YHHN’s population is broadly similar to the rest of the UK (e.g. age, sex, ethnicity) our findings also tell us about people across the country as a whole.
In order to carry out our core activities we:
- Record information about your disease, from your medical records.
- Link to national administrative data that contains information about your hospital appointments and admissions.
- Use laboratory samples left over from your diagnostic tests.
You can find out more about the types of information we collect on our associated HMRN website.
The information we collect is used in a number of ways. It may be used in research studies to look at who gets blood cancers, for example, or we may use it to audit the treatments given to patients in all 14 hospitals in the YHHN area. Importantly, these audits are carried out in collaboration with the doctors and nurses providing patient care in the area, and the information collected is used by them to ensure that patients are treated according to national and local clinical guidelines. YHHN data may also be used to help NHS managers organise care, allocate resources, and calculate costs. Clinical audits are published as reports and research is shared in medical journals. Together, this information may also be used to evaluate, for example, whether or not a drug should be approved for use in the NHS. Case studies demonstrating the way your data is used are shown in the links below:
Mantle cell lymphoma: from audit to NICE drug approval
Survival outcomes in diffuse large B-cell lymphoma
Data used in core activities are summarised to make sure no individual can ever be recognised, and YHHN Governance groups have oversight of all our work. For more detailed summaries of our data, please see the Factsheets and Statistics pages on the HMRN website. Please note that the data on the HMRN website is based on large groups of patients, so does not show what might happen to individuals.
Patient consent for core activities
We work closely with clinical teams providing care in the YHHN area to obtain patient consent to collect their data. Hospital inpatients are generally approached and given a pre-prepared information pack by a member of the hospital team, and outpatients are mailed the same pack on behalf of the team.
It is not always possible to obtain consent, however, as some people may be too poorly to be invited to take part. As it is very important that information is collected from everyone diagnosed since YHHN began (so our findings are applicable across all patients), YHHN has Section 251 support, which provides us with the legal basis to collect information without consent.