WCCS 2016 

How can we improve the reliability and quality of cancer registries?

Dr Ana-Maria Forsea - Carol Davila University of Medicine and Pharmacy Bucharest, Bucharest, Romania

This background is related to a kind of journey from my activity as a clinician and the research, or clinical research, from melanoma to understanding where the data that I’m using are actually coming from. I’m working in Romania, in Bucharest, and the experience there with melanoma, cancer cases, is that many people get advanced tumours, are diagnosed late. We have many patients that die unnecessary deaths. This is not only a skin cancer problem it’s in many other cancers. However, here comes the need to do something for these people. So when you try to do something like mount an intervention for early detection or to improve treatment, to help those patients, then you hit the block of unavailable or imperfect data and numbers. You need clear data about the cancer burden to justify your intervention and to measure your progress.

That’s where you realise the data are far from perfect and those statistics that are so often published and that everybody seems to take for granted are far from perfect. This was my experience, that for Eastern Europe actually those published data do not reflect the reality and they are contradictory with our experience. That’s when I started to try to understand better where this data comes from so I turned from an unaware data consumer, if you want, to trying really to understand where does data come from, how they are produced and how we can improve those data in order to support any action we want to take for the benefit of our patients.

The cancer registry, that’s where you get your data, cancer data comes from cancer registries because cancer registries are actually the organisation which are supposed to collect, to store and to analyse and report all data, all information about all cancer cases occurring in a certain population, so in a certain area. So in the minimum scenario these cancer registries give you information about how many new cases there are, how many people die from cancer and minimal information like gender or age. But if these cancer registries are better and can afford to collect more information then there is a wealth of supplementary data like in which stage these patients were diagnosed, late or early? Was a screening programme in place, did it function? How late did they get the treatment? Did they get the right treatment? How they were treated, how were the survivors, were they handled and what were the problems? So all this wealth of objective data can only come from the cancer registries and are indispensable if you want to know what the current cancer burden is in a certain area, which are the causes, what you should do, what is the point of intervention to improve the situation.

So these are crucial, cancer registries are crucial for any way of tackling cancer control. But, on the other side, it’s very interesting that these cancer registries are very little visible to the very people who are using their data. They are very little visible for clinical researchers like myself not far ago. They don’t understand the complexity of their work, of their function, the needs that they have to overcome in order to produce quality of data. They are not really visible for the patients who don’t understand how crucial cancer registries are to document their suffering, to document their problems. Otherwise patients die without nobody noting them. And they are really not so visible for the policy makers because they are perceived somehow like a tool for research, like a luxury, like we have so many problems. People are dying, we have to do something, we don’t care so much about data or this epidemiological stuff. It’s not epidemiological stuff, it’s the only tool you have to understand where the problem is, to plan where the priorities for action are and to orientate where you locate your resources.

So these are the background, somehow, for my papers - the importance of cancer registries and the lack of visibility. In my paper I tried to review, to put together all the information I got along these several years, in a way that is clear, it’s a language plainer that can be accessible for physicians but also for patients and patient organisations, for the public and hopefully also for the policy makers. So that people understand what has been done in the area of cancer registration in Europe, what the problems are, where the disparities exist and hopefully what are the possible pathways to get better.

How could this benefit other countries?

The main finding about cancer registries in Europe is that actually there are big disparities in their quality, in their coverage, in the quality of data they produce and these discrepancies of course reflect in the disparities of epidemiological statistics that are published. These disparities must be overcome because we need to be able to compare and share data about cancer across Europe in order to effectively fight cancer in Europe. If we don’t have comparable data in covering data for all Europe then there’s no European cancer control plan.

In Europe there are 28 countries in the European Union, 28 countries, 28 different systems because health systems are, by EU law, are the business of member states. So each system is different, the place of cancer registration in each system is different. The legal framework is different and all those differences must be overcome.

So what I tried to do in my paper was to gather the information available so far, show that there are models that can be shared because I’m a firm believer in sharing know-how and I’m a firm opponent of re-inventing the wheel. The tendency is to re-invent the wheel in each country, in each place, but we should not do this. There is already a wealth of information about cancer registries across Europe, about the best models, about the best practices, and I hope that this review that I did shows this. This information exists, recommendations exist, guiding exists, it’s only a matter of will, of taking this information and putting it into action at the level of each member state and, of course, then in cooperation.

What are your hopes for the future?

The main vision for the future would be what has already been proposed, so the European Union aims to have a European cancer information system which would be like an integrated platform pooling together all the information available about cancers which would be, of course, the vision for the future. But in order to do this, in order to overcome all these differences, there are several things to be done. So first would be the harmonisation of the legal systems. Cancer registries mean data of patients, so mean regulations about data protection, personal data protection, confidentiality and so on. These systems need to be harmonised in order for the data to be collected in the same way and then shared in the same way.

Then another step, important step, is one I mentioned. The policy makers need to understand the crucial importance of these cancer registries. Without them there is no cancer control, there is no planning; it’s like going somewhere without a compass. As long as the politicians and the policy makers don’t understand this priority nothing is going to happen. They have the tools, they have the recommendation, so they only need the will to push this up on the agenda. And the public and the other civil society can help policy makers understand this. It’s in everybody’s interest that all stakeholders like the public, patient organisations, physicians push, make clear, that this is a priority and push for registration and data availability to be a high priority.

Third, so last but not least, we need to move from mapping to benchmarking. So far there has been a lot of mapping going on, like how they do in certain countries, how this model looks like in another country. We need objective, measurable parameters. Only qualitative description will not help because we need to move forward so we need to measure the progress and measured progress means measurable parameters. Common standards, measurable standards, so that in ten years from now we don’t get a new map but we get clear, measurable parameters how each system progressed, how not and where more help is needed. So these are the three pillars that I would envision – information and objective measuring is important.

Any final thoughts?

Cancer registries need to be visible and all different categories of stakeholders must understand their importance. Especially the patients, the patient organisations, who it’s now the talk about empowering the patients and patients should be part of the decision about their lives so they would need to understand the crucial importance of their data being recorded and being publically used to improve their own life. On the other side, the visibility for politicians, the policy makers need to make measurable progress and need to put action. Action for cancer registries is long, it’s a long-term progress which surpasses the usual electoral cycles. So a commitment for longer term is needed, clear benchmarking and political will to put in practice all the recommendations that already exist. We cannot blame the lack of information for the lack of action.