Part I: Overview of Cancer Information system in Europe
Part II: Strategies for future developments
Andrey Kovatchev (EPP, BG) introduced the workshop and said that cancer is still the second cause of death in Europe. 3.2 million EU citizens are diagnosed with cancer each year. To respond to this trend, a European cancer information system will be established. Several EU and national databases already exist and research activities are ongoing in Europe. But so far there has not been any coordination, resulting in fragmentation of effort and cancer data. The Commission in the Communication on Action Against Cancer suggested the creation of such a system. Andrey Kovatchev introduced the workshop, the situation today and the potential for a future development strategy.
Part I: Overview of Cancer Information system in Europe
Dr Stefano Rosso, Chairman, ENCR (European Network of Cancer Registries); Piedmont Cancer Registry, ‘Centro di Prevenzione Oncologica (CPO)’, Torino, Italy, made a presentation on the history, purposes and use of cancer registration.
Dr Rosso explained that cancer registration began early before the Second World War, with most of the cancer registries beginning soon afterwards. One of the first meetings organised was by UICC in the fifties and convened most of the experts at that time. The UICC recommendation stressed the point that cancer registration is very important for setting aims and targets on experimental studies. The other point was on the quality of registration. This means that registers must be complete and accurate. The principles are still present in current work and will probably remain this way. Since the fifties, the coverage of cancer registration spread and worldwide coverage increased. A large part of Europe is now more or less covered, but with different strategies, he said, illustrating his point with a graph showing the epidemic of cancer registration in Europe. While Europe is growing well, there are more resources to spend on registration, he indicated. Some European countries are fully covered and others (France, Italy and Spain) chose different strategies, deciding to start with small and medium size cancer registries in their countries. The full coverage of those countries is granted by estimation from those points of registration. It is a different strategy, but it works well. On the other hand, Greece and certain non-EU Member States are not covered. Russia is represented only by one cancer registry, so room exists for improvement in the coverage of this.
Dr Rosso spoke about the use of cancer registries, mentioning epidemiological surveillance, testing, evaluation of the impact of preventive interventions on populations, evaluation of cancer care, economic evaluation and planning of cancer care policies. Registries already publish on all these fields. All these points are well covered and this should be a better way to show the value of cancer registration. Cancer registers can give help that is essential for the best scientific evidence. These all come in at a very low cost, less than 1 euro per inhabitant, Dr Rosso continued. Compared to the cost of cancer care, this is insignificant.
There is no unique way of doing cancer registration. But even if there are different institutions they share the three main targets, scientific excellence, population coverage and accuracy, he concluded.
Ms Manola Bettio, Institute for Health and Consumer Protection, Public Health, Cancer Policy Support, European Commission Joint Research Centre (JRC), made a presentation on the role of the JRC in the harmonisation of cancer data across Europe.
She began by explaining the areas of activities of the JRC, before explaining its role in the cancer registration domain and policy developments.
The JRC is an atypical DG of the Commission, not political but scientific, the Commission in-house science service. It is independent of any national private or commercial interest. The work is based on a network and consensus. It hosts an Institute for Health and Consumer Protection with specific fields of activity. The cancer information team is part of the public health unit, established at the end of 2012.
Ms Bettio continued by looking at the background and supporting legislation, mentioning article 168 of the Treaty of Lisbon and the White Paper Together for health: a strategic approach for the EU 2008-2013. Furthermore, in 2008, the Parliament adopted a Resolution, which was followed by Council conclusions, stressing the need for cancer registries and the role of the Commission in supporting a network. In 2009, the Commission adopted a Communication on a European Partnership for Action Against Cancer, stressing the need for accurate and comparable data. A Decision was subsequently adopted in 2011 that gives the JRC the mandate to maintain EU cancer burden data, accurate and comparable data on cancer incidence prevalence, cure survival and mortality.
The need for a Cancer information System in Europe is centred on two main reasons:
• Policy: good policy should be based on good data. This makes the monitoring of the history, evaluation and impact possible
• Research: the basis of research is in data
The JRC hosts the secretariat of the European Network of Cancer Registries and continues its work. It establishes and steers Working groups to address specific issues of interest to the community. It stimulates collaboration between stakeholders and research institutes. It develops statistical data visualisation and reporting tools for illustrating and comparing cancer data across Europe. It transfers and disseminates results.
Ms Bettio’s presentation looked at the European Network of Cancer Registries (ENCR) since its establishment in 1990 and which objectives are to promote and improve data registration. The ENCR data are collected and maintained in the European Cancer Observatory (ECO). Data are standardised and comparable and output is accessible. The ENCR has also been issuing recommendations to the cancer registry community and giving consultancies reviews and training courses.
In addition to hosting the secretariat since the end of September 2012, ENCR achievements include the launch of a new website, the publication of newsflashes, factsheets, the co-organisation and co-funding of a training course with IARC, targeted to countries where the level of cancer registration was quite poor. Last year, the ENCR launched a Working group with stakeholders and research groups, to work together to come to a common set of quality criteria for cancer registry data in Europe.
Ongoing and future commitments are to continue ongoing activities in publication, training, conferences and workshops and to be active in maintaining the registries and to disseminate the information. Another objective is to enhance collaboration between stakeholders and research groups and to stabilise the maintenance of cancer data.
Dr Hans Storm, Association of Nordic Cancer Registries (ANCR); Director of Cancer Prevention and Documentation Department, Danish Cancer Society, Denmark, made a presentation on the current situation of bio-banks and data protection and interface with cancer registries.
Dr Storm began his presentation by explaining what biobanks are, illustrating his explanation with the example of Denmark and its National Biobank. He detailed the process of collection of samples and data, the rules in terms of consent and ethics and the process allowing access to data for research purposes. Dr Storm’s presentation touched upon the use and outcome of biobanks, in identifying biomarkers, looking at genetic disorders and making association of genotypic with phenotypic data. The prerequisite is to link individual biological data to other data on the individual.
Biobank research brings reliability, efficiency and past exposures, and allow for immediate and long-term results. This was illustrated with the Swedish example on HPV vaccination.
Dr Storm presented the current legal status of biobanks and focused on the issue of personal data and health research, touching upon clinical, epidemiological and biological research, i.e. research based on individuals, population and combined, and the questions of consent, ethic and regulation. He posed the question of derogations and who decides public interest in the area of public health. He raised the question of informed consent in the case of health research and the impact of the current LIBE Committee compromises with regard to the proposal for a Regulation on General Data Protection, saying LIBE Committee compromises are unclear with respect to public health research and epidemiology. In fact many proposed derogations point to separate legislation for research, in particular public health, and for medical cross border treatment, follow-up and research.
He concluded with recommendations:
• Biobank research should be endorsed and facilitated, like quality control, method development and teaching.
• Stored tissue samples and associated data can be used without consent pending ethical approval.
• The minimal risk of harm is clearly outweighed by each individual by increased chance of benefiting directly or indirectly from healthcare.
• Ethical and confidentiality standards for cancer registries and epidemiology also apply.
• Research on health data can be done in an unethical way and this should be avoided.
• Research on data of low or uncertain quality should also be avoided, but failure to do health research is also unethical and devastating for public health.
Questions and Answers
A representative from the European Public Health Alliance and COPD Coalition said that this was a timely debate and he was impressed to see the scientific evidence on efficiency of cancer registries. He asked a question of all speakers about the integration of cancer registries. He noted a quantitative problem due to the existence of different national registries. He asked about the qualitative aspect and the use of registries for other diseases such as COPD. COPD has common factors with certain cancers, similar treatments, co-morbidities and risk factors. Would it be possible to use the cancer registries for other diseases in respect of the data protection regulation?
Dr Storm replied that the situation will depend from the country, giving the example of Denmark. You can use the same software, the same methods, but need to have the specialist included to get the relevant variables. If you increase the volume of data, you might lose the quality because of less knowledge, he said.
Dr Rosso added that cancer registrations started early and most of the standards developed can be taken for other pathologies. What makes registers different is the organisation building the register.
Part II: Strategies for future developments
Dr Milena Sant, Leader of Data and Information Work Package in European Partnership for Action Against Cancer (EPAAC), EC project; and co-leader of the EUROCARE cancer survival study; Fondazione IRCCS ‘Istituto Nazionale dei Tumori (INT)’, Milan, Italy, made a presentation on the roadmap towards a European Cancer Information System (ECIS).
Dr Sant presented the outcome of the EPAAC, the main objective of was to unify the information. The expected outcome was to develop a proposal for an ECIS. She explained the purpose of Work Package (WP) 9 on Health information and the collection and analysis of comparable data. With the WP, they provided output on cancer survival data update (EPAAC Book chapter 6) and providing ECO with survival and prevalence data. The WP also organised a MEPs Against Cancer (MAC) roundtable on Key determinants of inequalities in cancer survival across Europe. EPAAC Book Chapter 6 includes mapping of cancer data sources, status of cancer indicator availability and the ECIS document. It also synthetises key agreements between cancer data providers, including IARC, ENCR, JRC and EUROCARE.
Dr Sant summarised the main points of the proposal:
• The collection of data is costly and usually financed with public money but value of data is directly related to the extent to which it is used. Limiting access strongly hampers the effective use and, in some cases, the use tout court of the data itself.
• The data included in ECIS should be openly accessible by the scientific community and other stakeholders under appropriate regulations, with the only limitations necessary to avoid disclosure of sensitive individual information.
She presented the advantages of such ECIS:
• Make indicators of cancer burden available at European level
• Facilitate research on the causes of human cancer and mechanisms of carcinogenesis
• Increase political commitment for cancer prevention and control
• Make delivery of evidence based approaches to cancer control easier
• Strengthen health systems at national and local levels to deliver care for cancer patients
• Help establishing networks of cancer control partners and experts at global, regional and national levels
• Help evaluating the dissemination and the effect of at low cost and maximum advantage best practice interventions, especially in developing countries.
She continued by giving a definition of the ECIS and its main characteristics:
• One access point for data retrieval
• Network based data analysis and data quality control
• Operating as a research infrastructure for cancer community at large
• Funded on a sustained basis
The JRC will have a central role in the establishment of such ECIS and on its coordination. It will work in collaboration with all major actors to define the best effective options on all major ECIS functions: data management, data quality control, analysis and diffusion, which she further detailed in her presentation.
She concluded by explaining that:
• Technical and operational solutions for the development of ECIS have been outlined by the WP9 document
• Most of them are already feasible, relying on existing resources and at a very limited cost
• The main ECIS tasks can be organised in several different ways, according to different institutional and policy related constrains
• The realisation of ECIS is, in their view, only a matter of political will to pursue increasing integration of EU in the area of Research and Public Health.
Dr David Forman, Executive Secretary, International Association of Cancer Registries (IACR); Head of Cancer Information Section, International Agency for Research on Cancer (IARC), France, made a presentation on moving towards harmonising the process of cancer registries with the development of one common procedure.
Dr Forman spoke about the role of his agency in relation of the work on cancer registries. Cancer registries support has been a key component of the agency activities, he explained, and the results produced by registries make the best advertisement for their activities. He illustrated this with a map and a graph on estimated incidence and mortality from cervical cancer in women in 2012. He explained that the WHO has outlined the need to measure, as What gets measures gets done.
He presented the key message of the Global status report on Non Communicable Diseases 2010: Population-based cancer registries play a central role in cancer control programmes because they provide the means to plan, monitor and evaluate the impact of specific interventions in targeted populations.
Dr Forman went on to present the priority area of IARC, describing the global burden of cancer with different objectives.
• To act for WHO as the definitive international reference point for collection, storage and statistical analysis of data on cancer incidence, mortality, prevalence and survival.
• To expand the coverage, continuity and quality, particularly in regions where data are lacking
• To use these data to support cancer control and as a platform for research
• In fulfilling its objectives, IARC depends critically on interaction with cancer registries worldwide and with the IACR, to which it provides the Secretariat
IARC is also proposing training, produced a portal and will be releasing a new version of the IARC website giving the opportunity to have report and data on the web. The IARC also supports recognised publications websites and databases.
Dr Forman concluded on the recent publication of the World Cancer Report 2014. He spoke about the global initiative for cancer registry development in 2011 and the aim to improve capacity in low and middle income countries to produce reliable, high quality information on the burden of cancer.
To conclude, they are endeavouring to harmonise the work of cancer registries by:
• Placing cancer and its surveillance firmly on the emerging global non communicable disease agenda
• Bring quantum improvements in cancer registration in low and middle income countries
• Prioritise capacity building and training at national and regional level so that the skills and resources will be there to continue the hubs into the future
• Enhance the quality of global cancer statistics for the benefit of cancer control.
Ms Jana Pelouchová, Secretary, European Cancer Patient Coalition (ECPC); Founder and Chairperson, Diagnoza CML (chronic myeloid leukemia) Patient Society, Czech Republic, made a presentation on the indispensable contribution of patients.
Ms Pelouchová began by presenting the work of ECPC in advocacy and network building. The structure of activities goes from advocacy capacity building, master classes, partnering with medical and research organisations, up to being the patient partners of research projects. She explained that the collection of data is essential for the provision of an advocacy tool to approach health authorities and addressing the most important issues, such as prevention, patients and healthy life styles. ECPC addresses inequalities and advocates for the development and implementation of minimal standards of health and social services.
The key issue is the collaboration of professionals and patient organisations with policy makers on national and EU levels, and to increase EU population covered by cancer registries. Ms Pelouchová presented the ECPC position on the impact of the General Data protection Regulation, which, in its current form, will stop all public health research as we know it in the European Union. ECPC shares the common position of ESMO and pleads for the concept of broad consent for retrospective and epidemiological research, which would allow patients to give consent to a range of research uses of their data, to address questions that may arise in the future and which could not have been framed at the time of data collection. Broad consent would still operate under strict safeguards and approval by ethic committees. She continued that derogation from informed consent should be made for population-based disease registries, such as those for cancer and the communicable diseases.
She concluded her presentation by exposing different requests of cancer patients for the next legislature:
• Making cancer a priority on the political agenda and addressing disparities that cancer patients and families face every single day of their lives throughout Europe.
• Actively supporting the implementation of an EU Cancer Plan
• Supporting the right of European citizens to an optimal standard of cancer care wherever they live and irrespective of their income
• Adopting the principles of the European Cancer Patients Bill of Rights, a charter for change in cancer care in Europe
• Strengthening a cross party MEPs Against Cancer (MAC) Alliance so that it soon qualifies as an EU Parliament interest group to actively represent cancer-related issues
• Encouraging and intervening for the establishment of a Europe Cancer Survivorship Plan, to address the needs of more than 14 million European citizens living with cancer.
The discussion posed the question of links between registers and issues that might be arising from it. It also touched at the cost/benefit of registers compared to the cost of care, as well as the role of the JRC as an EU body in a European region.
MEP Kovatchev concluded by saying that the workshop brought food for thought to the Parliament. He reminded the audience about upcoming milestones, including the vote on the Tobacco products directive, the discussion on an Alcohol strategy action plan and other issues such as data protection.