On the 5th of December 2013, the European Cancer Patient Coalition, represented by Jana Pelouchova, attended the MEP’s Against Cancer Round Table organised within the European Parliament. The meeting was hosted by Alojz Peterle, MEP, to discuss the “Key determinants of inequalities in Cancer Survival across Europe: Latest results of the Eurocare 5 Study’’. The meeting coincided with the launch of the Lancet Oncology paper “Large differences in cancer survival between European countries still remain despite major improvements in cancer diagnosis and treatment”.

In summary, the main differences in survival were explained by the following factors:

– The need to clearly define the nature of each cancer ;

– The stage at diagnosis, which has to be carefully identified taking into account the intensity of the diagnostic examination;

– Lifestyle;

– Co-morbidity;

– Inequalities to access optimal treatments.

There is thus a need for education of patients, medical specialists and policy makers to understand these factors so as to tackle and reduce inequalities.

An important issue that was also addressed during the meeting was the accessibility of data and the importance of efficient and up-to-date Cancer Registries in each country.

The European Commission published in 2012 the “General Data Protection Regulation” to replace the previous directive on Data Protection. This proposal, while wanting to protect the interests of individuals, raises the threshold for informed consent. This may cause issues for researchers and affect epidemiological, translational and clinical cancer research ultimately having negative implications for patients.

Jana Pelouchova, ECPC board member, used this opportunity to present ECPC’s position on this serious matter.

‘As far as National Cancer Registries are concerned, ECPC is advocating for the endorsement of a derogation from the requirement of informed consent. Furthermore, ECPC urges its member organisations to contact their Health, Justice and Research Ministries and inform them about the consequences of the Proposal for a General Data Protection Regulation on cancer research and epidemiology’, highlighted Jana Pelouchova in her speech.

Consequences of an unnecessarily strict Data Protection Regulation

What we will not be able to do in the future if population disease registries become unreliable:

– Give accurate advice on genetic risks to individuals visiting cancer genetics advisory services;

– Identify screening centres where too many cancers occur between screens (interval cancers)

– Identify or monitor Health Authorities where cancer survival rates are too low (NHS Outcome Indicators)

– Increase exponentially the time and costs it takes to complete research – this will particularly affect grant-based research, where allocated budgets cannot be exceeded;

– Reduce the possibility for cost-effective research by smaller organisations such as NGOs, universities and SMEs;

– Increase costs to public budgets for government research programmes;

– Increase administrative costs for healthcare facilities that are mandated to collect and submit epidemiological data.

In the upcoming period, ECPC will focus on writing on the same topic and consult with:

– All MEPs ;

– The President of the European Council;

– Oncology and other scientific medical societies and institutions;

– Research Institutes and Organizations;

– Other European umbrella organizations asking them to join .

ECPC believes that we should all bear in mind the consequences for research in Europe of an unnecessarily strict Data Protection Regulation.

Alojz Peterle mentioned the need to define a more ambitious and stronger agenda in public health for the future mandate and he concluded the meeting by emphasizing the importance of joining forces with ECPC towards a common goal: to get a good directive in data protection that will be to the benefit of epidemiological and medical research.