Imagine a future where you can go online and compare which hospital is the best in your area to treat your type of cancer.
A future where, as a cancer patient, you have all the information you need to be an equal in the decision-making process about your treatment.A future where you can go online to book a screening appointment – and find out your results.
That future is coming – and it’s not as far away as you might think.
This was the message coming loud and clear from this year’s National Cancer Intelligence Network (NCIN) conference, held in Birmingham last week.
Five hundred delegates came together – including statisticians, GPs, cancer specialists, researchers, policy makers and, importantly, nearly 100 cancer patients or carers – to hear the latest progress being made in ‘cancer intelligence’.
And by ‘intelligence’, we mean in the James Bond-sense of the word: knowing everything there is to know about our enemy – cancer. That means knowing everything about each person’s cancer journey, from before they are diagnosed, right through their treatment, their follow-up, and anything that happens after that.
Information is king
Until recently, the data collected about each cancer patient in this country, at each stage of their journey, has been incomplete. But this is changing. In the modern world, information is king. And it’s well recognised that information on exactly how patients fare is key if we are to improve cancer survival rates in the UK.
As Chris Carrigan, Head of the NCIN, told the conference, “golfers don’t get better if they don’t record their score”. It’s no different with cancer services. We need to measure progress as comprehensively as possible so we can make sure patients are receiving the best possible care.
And it’s not just important for patients and carers to have access to this information. Policy makers, commissioners, service providers, researchers, industry and the media all have their part to play.
Four and a half years ago, against the backdrop of reports that cancer survival in the UK was lagging behind that of several of our European counterparts, cancer tsar Professor Sir Mike Richards set out his vision for the future: “Quite simply, we want to have the best cancer information service in the world by 2012.”
Sticking with the James Bond analogy, this was the mission. And as in any Bond mission, it’s a huge challenge and the ride is bumpy – but the cause is worthy and indisputable.
At the time, this vision was a far cry from reality. One of the biggest reasons was that isolated and incomplete data were being stored in separate databases in incompatible formats, making it very difficult to keep track of progress and compare different hospitals, treatments and outcomes.
This led to the launch of the National Cancer Intelligence Network (NCIN) in June 2008, which set about filling in the gaps. And the audience were excited to hear how far it’s come in such a short time.
A comprehensive centralised database
The general consensus was that the cancer community has made massive progress and, as Professor Sir Alex Markham, Cancer Research UK’s former chief executive said, we have “something magnificent to build on”.
At the heart of recent changes is the move to store data collected about all cancer patients by the local English cancer registries in one centralised database. It’s a tall order. Each year, over 265,000 patients in England are diagnosed with cancer across a population of over 50 million people.
Dr Jem Rashbass, National Director of Registry Modernisation, set out his vision with huge enthusiasm – “to provide near-realtime cost-effective data collection and quality assurance over the entire cancer care pathway on all patients in England.” Ambitious – yes. Impossible? Ten years ago, people would have said yes, but today it is within our grasp.
The answer is the ENCORE database (the English National Cancer Online Registration Environment) – a one-stop shop for all cancer registries. Some cancer registries have already migrated to this database. By the end of this year, all cancer registries in England will be recording their data in this one place.
And they’ll be recording extremely detailed information, including a patient’s age, sex, location; how and when they were diagnosed; the stage their cancer was at; results of tests done on tissue or blood samples; the treatment they received; and importantly, the outcome of that treatment. And on top of this, where appropriate, they’ll combine data on cancer screening, on the scans patients have had, on waiting times, on patients admitted as emergency cases to hospital. The list goes on.
“The world has changed”
So why is such a centralised database so important?
As Dr Rashbass explained, “the world has changed” and there are two main drivers for the modernisation of the cancer registries.
Firstly, a new generation of treatments is emerging, that target individual genetic flaws inside cancer cells that aren’t present in everyone with the disease (so-called ‘personalised’ or stratified medicine).
And secondly, more and more, patients are feeling empowered to ask about their care and be involved in decision-making – and need information to allow them to do so.
And what will all this mean? It means it will be possible to have a “helicopter view nationally” of people’s cancer care pathways. Doctors and researchers will be able to map survival outcomes, track people’s pathways through the healthcare system, even if they move location at any point, and see where people are receiving good care and where they are not, and where things need to improve.
Unlocking its true potential
Crucially, researchers and doctors need to analyse this mind-boggling large collection of complex data to unlock its true potential. This theme was returned to again and again throughout the conference. It’s no good “stamp collecting” as Dr Rashbass puts it – the data need to be shared and examined for maximum impact.
This will allow researchers and doctors to spot trends; to help cancer commissioners organise their cancer services and plan ahead; to help researchers find patients that will be eligible to take part in their clinical trials; to spot which treatments are really making the difference; and to find ways to improve clinical practice.
It’s important to link this data to other data sources too – like the GP’s electronic health records, the hospital emergency statistics, data from cancer patient experience surveys, and to patient reported outcomes to build up as comprehensive picture as possible of each patient’s care pathway.
And it’s not just cancer data. We heard how, in Wales, their equivalent of ENCORE (called SAIL) is linked to data about the environment, which can help show links between cancer incidence in certain areas and pollution. It’s also linked to a database about school attainment and housing, which can provide important information when following a child with cancer.
We know through the NCIN’s previous work that nearly a quarter of all cancer cases are first diagnosed when a patient goes to A&E with symptoms. Without the NCIN, we wouldn’t have this information – it’s a sobering statistic, but you can only start to tackle a problem once you know its true size. It was heartening to hear at the conference how researchers are testing ways to monitor the number of people being diagnosed with cancer in A&E as rapidly as possible to see if this number is now coming down.
We also heard from Professor Mike Stevens from Bristol Royal Hospital for Children about how important it is to monitor the number of times a child visits the GP as well as the symptoms they have when diagnosing childhood cancer.
His team analysed electronic GP health records to investigate this, and found that 45 per cent of children who developed cancer had been to their GP at least three times in the three months before they were diagnosed. Because childhood cancer is very rare, it can often be difficult for GPs to spot. This study showed how important it is that patterns of visits should be paid attention to, not just symptoms.
And we heard how analysis of data is already changing how patients are being treated in hospitals. For example Dr Mick Peake explained how a recent study has shown that, in those areas of England where more lung cancer surgery took place, more people survived the disease. This research has led to a change in clinical practice, and surgery is now on the increase again in those lung cancer patients for whom it is appropriate.
Without recording surgical and outcomes data, this decision to change clinical practice could not have been made.
Vital to the success of any database is the interface that allows information to be displayed in a meaningful way. Two electronic tools in particular were highlighted at the conference – each intended for a different audience.
Di Riley, Associate Director of the NCIN Clinical Outcomes Programme, spoke with enthusiasm about the Cancer Commissioning Toolkit – a website designed to help commissioners plan the cancer services in their area and ensure they are getting value for money. It allows commissioners to look at different services and compare them to the national average.
And a website aimed at the general public was launched at the conference. “Choosing treatment” is a joint venture between Macmillan Cancer Support and the NCIN. It brings together information from a range of sources including patient experience surveys and peer review assessments of cancer services, to give people more information about their local hospitals and help them decide where to have treatment. For a trial period, the website is focusing on bowel cancer and it may expand into other cancer types if it’s successful.
And just yesterday, The Roy Castle Lung Cancer Foundation launched something similar.
So what lies ahead?
The NCIN and its partners have done an astounding job – starting with no budget four years ago to becoming the established network it is today.
It’s early days – gaps remain and it’s still difficult to collect certain types of data, including information about quality of life, chemotherapy treatment, palliative care, and cancer recurrence, to name but a few. And as treatment becomes ever more tailored to the individual, we will also need to tackle how we collect and integrate genetic information about each person’s cancer.
Of course there are challenges, and the mission isn’t yet complete. But there was an overwhelming sense at the conference that there’s every reason to be optimistic.
And the significant progress the NCIN has already made shows that improving cancer care through better data is far from mission impossible, it’s mission possible.