Fractured cancer care in the UK - why I joined the Bowel Cancer Intelligence UK PPG
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.
BCI UK PPG Member stories featured in Cancer Revolution: Science, Innovation and Hope Exhibition
The Science Museum Group, with support from Cancer Research UK, have created a world first exhibition ‘Cancer Revolution: Science, Innovation and Hope’.
The exhibition, which begins at The Science and Industry Museum in Manchester on 22nd October, shows how far we have come in the prevention, detection, and treatment of cancer, and highlights the important challenges that still exist.
As well as looking at how cancer has been treated over the centuries, the causes of cancer and how the disease isn’t unique to humans, the exhibition also includes the stories of people living with, treating and affected by cancer today.
Two of the stories on display are from members of the Bowel Cancer Intelligence UK Patient-Public Group.
Lynne Wright’s inclusion is a photograph.
“CRUK asked their volunteers to let them know if they had a special something that had helped them get through their cancer treatment. Some of these items would then be included in a planned Exhibition at the Science Museum. For me it was the view from my window. In 2010 I was diagnosed with colon cancer, I had surgery but needed chemo and, at first, I found going through chemo difficult. I am lucky to live on the coast in East Devon and the view from my bedroom, over my garden to the sea, got me out of bed most days and made me realise that I was lucky to be alive and be able to look at this wonderful vista.”
Patrick McGuire also provided an artefact which features in the exhibition.
“It is a “diary” that relates to my wife’s end of life experience. Our Macmillan nurse suggested I compile it in the last few weeks of my wife’s life before she died from bowel cancer, aged just 52. It is a factual record of her symptoms, medication, eating and sleeping patterns, any medical visits to our home where she was and any medical interventions she received. It was to help me inform any health visitors, of which there were many, of her mental and physical condition which was complex and deteriorating. On reflection it is a fairly bleak account of her last few weeks alive without any reflection or insights just a factual record of her condition. Although bleak in itself there continues to be great hope for the future for others like Pam who continue to benefit from advances in research. It is this research that motivates me to keep volunteering and fundraising to try to ensure as few families as possible go through the devastating experience we went through. Research gives us hope for the future and a world where more people will have more tomorrows to share with their loved ones.”
The exhibition is free to attend and is on from the 22nd of October to March 2022 at the Science and Industry Museum in Manchester. It will then move to the Science Museum in London in the Spring of 2022. More information can be found here – https://www.scienceandindustrymuseum.org.uk/whats-on/cancer-revolution
PPG opinions on “Establishing a colorectal cancer research database from routinely collected health data – the process and potential from a pilot study”
The Patient and Public Group (PPG) of Bowel Cancer Intelligence UK (BCI-UK) helps to critically appraise the group’s research projects, review proposed programme outputs, and produce reports and summaries around publications such as this one from Professor Cunningham and his team.
As individuals we all have different experiences and have undergone different treatments and routes to diagnosis however as a group we all share the common desire which is to push for better and more efficient use of data to save patients’ lives. We feel strongly that data saves lives, but only when it is accessed, interrogated, and interpreted efficiently and effectively.
We are aware that there is a wealth of data out there about the diagnosis of patients, their treatment and their outcomes, however, much like the researchers who want to analyse this data, we are frustrated by the challenges involved in getting access to this data.
Data may be getting collected for monitoring, but it also needs to be used for improving care!
The PPG welcomes the colorectal cancer research database that has been set up in this pilot study. We have repeatedly asked the question “why is so much data being collected routinely if it isn’t going to be utilised”? We therefore feel this pilot study can only be good news for patients and practitioners alike.
We were particularly interested to see this pilot study is utilising linear data along the patient’s timelines and clustering these data as it seems an ideal way to identify both positive and negative outliers.
Utilising routinely collected health data makes good use of these data, but it does rely on the quality of the data capture within a busy NHS. It may be that the NLP algorithms compensate for this, but the dataset relies on inpatient data with the authors highlighting that outpatient data is difficult to capture, it would therefore be good to see initiatives introduced to ensure all the relevant data is captured fully to allow more complete data gathering.
We are aware of several similar databases in existence and in development, such as CORECT-R, S-CORT and IMPACT, and whilst these datasets are all slightly different and focus on different aspects of care, there is much to be gained by them being combined in one central repository. This would allow more comprehensive analyses enabling trends and patterns to be identified sooner and therefore acted upon.
The authors of this study have highlighted that there is the potential to explore variances in practice from their dataset. It is the hope of the PPG that the various databases are combined and that by doing this they will be able to more fully inform clinical practitioners on the most effective ways to manage their patients with the tools and treatments available to them, all findings need to be rolled out into practice in a structured way and this is an area where the NHS is currently falling short.
A great deal of research time is understandably going into new treatments and advances, but these are usually in the mid-to-far future, and therefore unlikely to be of benefit to existing patients, especially those with advanced, stage 4 disease. What we need as current patients is guidance for clinicians on the best use of existing therapies through recognising and sharing best practice via combining datasets.
As patients, we don’t have the luxury of time – data needs to be accessed quickly or it might be too late for us.
Looking forward, the types of questions the PPG would like to see answered by these datasets are:
- Where are the hotspots across the country – good and bad – and addressing the gaps?
- What maintenance chemotherapy regimens get the best balance of effect and lifestyle for long term care of stage 4?
- What is the impact of different medical and holistic support programmes on treatment success and tolerability?
- Is there full and effective referral of patients between secondary and tertiary centres, between different Health Authorities and between the different nations of the United Kingdom?
The datasets can also generate clear evidence to help drive significant infrastructure investment to ensure early diagnosis of cancer.
In summary, we are excited to see this pilot study and hope that the initiative will be rolled out nationally to routinely analyse and utilise the routinely collected health data. However, we do feel strongly that this should not be a stand-alone dataset and that it is combined with other databases centrally.
Author – Steve Clark on behalf of the BCI UK PPG