Delivering Advancements Through Action
Imagine a metastatic (secondary) breast cancer community within the UK where everybody within it who has ever heard the words, ‘it’s incurable’, is counted and acknowledged within a simplistic data system that recognises the lives of the people annually who are diagnosed with metastatic breast cancer, patients who deserve access to the best available treatment in an attempt to control a disease that kills 31 of them every single day.
Let’s begin with the use of the word ‘simplistic’ because data collection shouldn’t be difficult, not in 2024 in an age where the touch of a button makes things happen immediately. Simplicity can make complex things happen, a paradox that can certainly be applied to the process of data collection.
Data drives the world forward, sparking innovation, technology, change and progress. Data inputting happens daily all over the world in all kinds of settings, but seemingly not in the UK when it comes to the collection of data relating to metastatic breast cancer. It is unbelievable that over a decade has passed since it became mandatory in England and Wales from 2013 to annually collect and submit data on the number of people diagnosed with metastatic breast cancer, yet it is still not routinely happening. It begs the question, why? (Incidentally, even my MP, Rishi Sunak, as Chancellor of the Exchequer in 2020 didn’t receive adequate answers to questions he posed at the time to my trust about the lack of data collection).
Data is the force behind any kind of progress. The treatment of metastatic breast cancer starts with data gathered from a series of diagnostic tests including blood and tumour profiling, x-rays, MRI and CT/PET scans, tests that provide information that definitively determines whether or not a patient’s red flag symptoms indicate the spread of breast cancer cells from the original site of the breast to distant organs within the body. Then what? How does submitting that data set impact progress?
It impacts progress because that data serves a purpose. It identifies, at a national level, the number of people diagnosed with metastatic breast cancer and the site/s of metastatic spread at diagnosis. This knowledge means the provision of services: treatment and support for those patients living with the disease can be resourced and delivered. This includes access to the best available treatments and surgeries, clinical nurse specialists who provide bespoke care, allocation of sufficient funds to research and develop new drugs to treat the disease and clear routes for patients to enter clinical trials.
Within England and Wales, our starting point for delivering all of the above is hampered. If we have any hope of delivering world-class cancer care reaching outcomes that rival other countries who are out-performing us, we need to get this outrageous lack of data collection issue addressed.
Wednesday 10th April 2024 marked the publication date of the first report on quarterly data from the National Audit of Metastatic (secondary) Breast Cancer (NAoME). Its contents highlight glaring data gaps. The reports states that in the time frame between October 2019 and September 2022, the National Cancer Audit Collaborating Centre (NATCAN) records show that 11, 468 patients had evidence of metastatic breast cancer. It is an inaccurate figure by many thousands, not least of which that it doesn’t include data about patients in Wales because that data hasn’t been submitted. Missing data means patients’ lives are still not being counted – real people whose lives matter.
The April NAoMe report signifies huge disappointment, and a spectacularly woeful picture, one that is hugely deflating. The brilliant work by METUPUK, Breast Cancer Now and other organisations campaigning to ensure every person diagnosed with metastatic breast cancer is counted, is being met with apathy within a health care system that isn’t respecting their tireless efforts.
Data is fundamental to progress. Without an accurate data picture how does the landscape change? The short answer is it doesn’t and while metastatic breast cancer progresses and advances, the systems in which we place our trust are embedded within trusts that are stalling and failing us. If you are reading this and sit within a senior management team that leads a hospital trust which hasn’t submitted any data, you have failed to fulfil your mandatory obligation. Mandatory means it’s not optional.
Cancer waits for nobody. It doesn’t care about data, but we do, and so too should every trust. So, let’s ask the question, ‘who really cares?’ We can say with resounding conviction that we do. The question is, does your hospital trust collect MBC data?
Laura Ashurst
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