Europeans will be able to compare cancer care – cancer registries chairman

What kinds of data do today's national cancer registries collect?

‘This data set includes data on the person (such as) age, sex, living place, data on the tumour … and crude data on therapy. If the patient dies this information, including the date of death and cause of death, is added. Many registries collect additional data on therapy, on relapse and more to give a comprehensive view on the tumour and its therapy.’

The planned European Cancer Information System (ECIS) will collate data and allow comparisons between Member States. How will people be able to use it?

‘I think for the citizens the most interesting thing to do will be to aggregate the data so they can see what is going on in their country, and they will also be able to see cancer-specific time points for their country to see whether (for example) lung cancer is going up in their country or not, and how it is in other countries, and how it is in the European Union.’ 

You have said the ECIS will be able to evaluate the success of medical treatments. How will that work?

‘Of course we cannot evaluate single medical interventions because for this you need very detailed data. But we can measure the healthcare system. If you pick out a cancer like skin cancer, and compare different countries, then you will see big differences. You will see differences in the average time point when the tumour is detected, and this is a measure for early detection. You will see the survival or the mortality of the cancer after treatment, and that is an indicator for the (quality of) therapy and intervention in the country.’

Could it be used to compare survival rates between countries, for example?

‘Yes and survival is important, to (enable people to) see the quality of the care, the therapy, and so on. Other measures, such as incidence, are important for evaluation of cancer prevention. For example, if you see lung cancer rates, they are a very important measure for smoking. You see the trends in countries which had anti-smoking laws very early, and lung cancer incidence is going down. So you can see whether preventive interventions are really working.’

Are there plans to use it to inform policymakers?

‘Of course. A very good example is the EUROCARE study which is based on cancer registry data. The study group is located in Italy and they did the analysis of cancer survival and you can see these really big differences in cancer survival within the European Union. We had one time period when you had worse data for the UK, for example, and the politicians and the government really took a closer look at this data, released a national cancer plan and tried to improve the care. And in fact they did better in the next time period. 

‘And that’s what I want, to drive (the ECIS) in the direction of having a benchmarking system in the future where you can benchmark care between different countries and draw conclusions to improve oncological (cancer) care.’ 

What trends are you seeing at the moment?

‘Of course trends in cancer incidence differ from country to country. In general, lung cancer incidence is declining in men, but increasing in women. This is to do with smoking habits 20 years or longer ago, when women started to smoke. They smoke almost as much as men now, and the rates are going up, and men cut down a little bit and you can see this in the declining rates. Skin cancer is showing a remarkable increase, while stomach cancer has been declining for years.’ 

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‘You can see whether preventive measures are really working.’

What kind of data can the ENCR produce already?

‘We have on our ENCR homepage publications and factsheets. These factsheets have comparable content to the data you will have later in the ECIS. You have some factsheets, for example, on breast cancer in Europe, and there you will find some data and you can see how big the differences in incidence and mortality are in Europe. You can see that some countries have high incidence, and others have low mortality and so on, and I think this is a quite an interesting picture. This is really interesting for politicians, for stakeholders and also for citizens. To be aware of such difference is the first step to improving cancer care.’ 

How will you move from this to the planned European Cancer Information System (ECIS)?

‘In 2013, the European Commission funded a European data centre. This centre is located at the Joint Research Centre (JRC, the EU’s in-house science service) in Ispra, Italy, and it now hosts the secretariat of the ENCR. First we started with a new data collection portal in 2015. Now we are analysing the most recent data and will set up a new enhanced ECIS. This will be based on a kind of prototype built in an earlier project (EUROCOURSE). It shows how you can look at the data and you will see figures for different countries and trends and so on.’

When do you expect the ECIS to be operational?

‘We are working hard on the development. Hopefully a first version will be online by the end of 2016, or the beginning of 2017.’