This was written for Bowel Cancer Intelligence UK, which supports two major cancer initiatives – The UK Colorectal Cancer Intelligence Hub (CRUK), and the Yorkshire Bowel Cancer Improvement Programme (Yorkshire Cancer Research)
I was diagnosed with advanced (stage 4) colorectal cancer in May 2013, when the disease had already spread to my liver and both lungs. I’ve been very lucky since then thanks to an excellent team who’ve given me great care – following both intensive and then maintenance chemotherapy, supported by occasional ablation I’ve just celebrated the eighth anniversary of my diagnosis with the bonus that I’ve been No Evidence of Disease (‘NED’) for the past 2 years.
I try to help fellow patients as much as possible – I run a campaign to give hope to stage 4 patients called Strive for Five (www.striveforfive.org) and volunteer with both Cancer Research UK and Bowel Cancer UK.
Almost two years ago I started volunteering on the Bowel Cancer Intelligence UK (BCI UK) Patient-Public Group (PPG), my first time on a formal PPG. BCI UK is the umbrella body supporting two important initiatives: the UK Colorectal Cancer Intelligence Hub which runs the COloRECTal cancer Repository (CORECT-R), and the Yorkshire Cancer Research Bowel Cancer Improvement Programme which aims to improve patient outcomes by identifying and addressing variations in care. The excellent work of the programmes really highlights how vital it is that we connect the various datasets around cancer care, so that researchers can interrogate these data and directly guide improved clinical care.
The reason that I started volunteering with BCI UK is simply that I’ve seen how fractured care of cancer can be across the UK, not from my personal experience as I’ve been very lucky, but via my work as a moderator of the Bowel Cancer UK patient forum. One of the ways to address this is by recognising there is a problem and using patient data to help improve care, especially of advanced disease. The old adage defines madness as “doing the same thing over and over again and expecting a different result”, surely that applies to cancer care – if we don’t review the data to see what’s working best, how can we hope to improve?
One of the BCI UK projects I was recently involved in resulted in me being a co-author on the paper “Creation of the first national linked colorectal cancer dataset in Scotland: prospects for future research and a reflection on lessons learned” which is a clear step in this direction by at least making the Scottish data accessible. That’s a start, now the real work begins by making the data work for us!
Some of the ways that this type of dataset could be used for colorectal cancer care could include:
- Identifying hotspots across the country – good and bad – and addressing the gaps;
- Maintenance chemo for long term care of stage 4 – what regimens get best balance of effect and lifestyle;
- Impact of different support programmes on treatment success and tolerability;
- Clear evidence to help drive significant investment to ensure early diagnosis of cancer
I hope to see this dataset, and CORECT-R being used in this way and look forward to being involved in this work as much as possible via the Patient-Public Group of BCI UK
It’s not always about new treatments; we need better use of existing therapies through recognising and sharing best practice.
As patients, we really need a united cancer network. A network that ensures our doctors have knowledge of, and access to, the best care for their patients. A network where the data on cancer care is available across borders to ensure best practice is readily recognised and gaps in care are addressed quickly.
I truly believe that we are achieving great improvement in the care of colorectal cancer, but so much more is needed, and the way forward is by collaboration between researchers, physicians and surgeons, with patients not just at the centre of the concepts, but actively engaged.