Frank Burroughs, Chair Patient & Public Involvement Forum for the National non-Hodgkin lymphoma Audit (NNHLA).
As one of the quarter of a million people in England living with non-Hodgkin lymphoma (NHL), I jumped at the chance to be involved in the first ever national audit of NHL.
Lymphoma is a haematological cancer, or blood cancer. It’s a cancer that develops from blood cells called lymphocytes that are part of the body’s own “drainage system” which we call the lymphatic system. This is a network of vessels, nodes and organs throughout the body that plays a crucial role in keeping us safe.
Lymphomas are grouped into Hodgkin lymphoma (HL) or non-Hodgkin lymphoma (NHL). HL has abnormal cells called Reed-Sternberg. NHL is any type of lymphoma that is not HL. NHL is not just one standard disease, though; there are many, many sub-types with different treatments for each – it’s a complex disease!
The National non-Hodgkin lymphoma Audit NNHLA sits under the ‘umbrella’ of National Cancer Audit Collaborating Centre (NATCAN), the home of ten national, data-driven audits in England and Wales. NATCAN is based in the Clinical Effectiveness Unit, at the Royal College of Surgeons of England. The NNHLA is the first national audit into the performance of the treatment of NHL in England and Wales. It presents a significant opportunity to make a lasting difference for people diagnosed with this condition. I am hugely excited to be involved in this groundbreaking project.
Every year around 15,000 people across England and Wales are diagnosed with NHL, and 250,000 people live with the condition.
I am personally very aware of the impact of an NHL diagnosis, having over 5 years of experience of living with NHL myself and also sadly having lost my sister to NHL after a short illness. I am therefore keen to do anything I can to help improve the care for others with NHL.
The NNHLA covers all 150 NHS England trusts and Welsh Health Boards, who provide secondary care for those with NHL. Using existing nationally available cancer data, provides a unique opportunity to identify variations in practice and clinical outcomes.
The audit aims to identify and promote areas of best practice and highlight where there are gaps in services. By applying appropriate statistical methods to the data, the team will be able to focus on where improvements are needed in patient care. The NNHLA will encourage learning from best practice with the aim of increasing consistency and reducing variation in performance across NHS trusts and Health Boards.
The data used by the NNHLA for English patients, is mostly from the Cancer Outcomes Services Dataset (COSD), which is provided by the National Disease Registration Service (NDRS) The NNHLA uses actual, real-world data covering all new cases of NHL diagnosed in recent years, and thus the data being analysed is recent and reliable. For patients in Wales, the data are provided by the Wales Cancer Network.
I’m now retired, but as a result of my career as an economist, I have seen first-hand that generating insights from business data can lead to big improvements. I’m confident we can do the same for NHL by powerfully turning data into knowledge with practical, and highly actionable insights.
Key to the success of the audit is close consultation with people with lived experience of NHL (patients, families and carers), to inform the quality improvement priorities. The NNHLA has established a Patient and Public Involvement Forum; working closely with and supported by NATCAN. If you are interested in finding out more about the work of the Patient Forum, please get in touch, by emailing [email protected].
September is Blood Cancer Awareness Month and those of us who use social media will see a national media campaign to raise awareness of the condition. During September, the NNHLA will be publishing its first annual State of the Nation report, providing important findings and insights from the audit. The audit will also be publishing its Quality Improvement Plan in September.
I’m optimistic that over the coming years, with the benefit of access to such extensive data, the NNHLA can do its part to help to improve both the care and outcomes for NHL patients.