STEERING COMMITTEE MEETING EUROPEAN PARTNERSHIP:ACTION AGAINST CANCER (EPAAC) Bruxelles 8th December 2010 WP 9  HEALTH INFORMATION AND THE COLLECTION AND ANALYSIS OF COMPARABLE DATA Milena Sant WP9 leader, INT Milan, Italy

Aims of WP 9 To map the main sources of cancer data in Europe and to identify the priority topics to be supported by the Partnership. To unify under a common platform cancer burden indicators (incidence, mortality, survival and prevalence) provided by existing European activities. To promote a European task force aimed to discuss the need for data on cancer costs and to produce an inventory of relevant available information. To initiate a development of a standardised approach to the routine collection of data on survivorship using population based cancer registries. To develop an inventory of statistical methods to analyse population based cancer data. Bruxelles 8/12/2010

Aims of WP 9 To map the main sources of cancer data in Europe and to identify the priority topics to be supported by the Partnership. To unify under a common platform cancer burden indicators (incidence, mortality, survival and prevalence) provided by existing European activities. To promote a European task force aimed to discuss the need for data on cancer costs and to produce an inventory of relevant available information. To initiate a development of a standardised approach to the routine collection of data on survivorship using population based cancer registries. To develop an inventory of statistical methods to analyse population based cancer data. Bruxelles 8/12/2010

Cancer Institutes clinical data bases EXISING DATA SOURCES: Cancer registries Statistical Institutes (population structure by age, sex and geographical area, population projections in the future, mortality). Administrative sources: density of general and specialized doctors, density of imaging machines, number of radiotherapy units, etc), drugs and other resources provided for cancer care. Cancer Institutes clinical data bases A European map of cancer information will be built, using the indicators identified by EUROCHIP and ECHI. The map will identify areas of data availability and data needs. Focal point: INT ACC (AP):organisation of final meeting to provide recommendations for the next programme of EC action (2014-2020) in the field of Cancer Information Bruxelles 8/12/2010

Aims of WP 9 To map the main sources of cancer data in Europe and to identify the priority topics to be supported by the Partnership. To unify under a common platform cancer burden indicators (incidence, mortality, survival and prevalence) provided by existing European activities. To promote a European task force aimed to discuss the need for data on cancer costs and to produce an inventory of relevant available information. To initiate a development of a standardised approach to the routine collection of data on survivorship using population based cancer registries. To develop an inventory of statistical methods to analyse population based cancer data. Bruxelles 8/12/2010

EXISTING CANCER INFORMATION Incidence from population-based cancer registries centralized and regularly published by IARC. Survival collected and centralized by the EUROCARE network and related projects (HAEMACARE, RARECARE). Prevalence most recent European comparative and observation-based data are those pertaining to 1992, provided by the EUROPREVAL project. Mortality collected at the national level by official death certificates. Cancer mortality statistics by country and registry area are organized and diffused by IARC. High Resolution studies with detailed clinical information collected by cancer registries (France, Italy, Spain, UK), centralised by EUROCARE Bruxelles 8/12/2010

Task delivered by IARC, ENCR WP9 will bring together all the existing partners working at the pan-European level on cancer burden indicators Provision of updated incidence and mortality data (including data from HAEMACARE and RARECARE) Task delivered by IARC, ENCR Population survival, and sample high resolution data on stage and treatment from cancer registries. Focal point: INT, ISS (through EUROCARE) Prevalence will be provided mainly from EUROPREVAL. Focal point: INT, ISS, in collaboration with IARC Bruxelles 8/12/2010

Aims of WP 9 To map the main sources of cancer data in Europe and to identify the priority topics to be supported by the Partnership. To unify under a common platform cancer burden indicators (incidence, mortality, survival and prevalence) provided by existing European activities. To promote a European task force aimed to discuss the need for data on cancer costs and to produce an inventory of relevant available information. To initiate a development of a standardised approach to the routine collection of data on survivorship using population based cancer registries. To develop an inventory of statistical methods to analyse population based cancer data. Bruxelles 8/12/2010

- Constitution of a task force of experts, epidemiologists, health planners, economist and stakeholders, to reach consensus on common methodology to collect cancer cost data. - inventory of population based studies on cancer costs - discussion on best methodology to collect comparable data on cancer costs at population level - regression analysis between socioeconomic indicators and cancer outcomes to study correlation between economy and cancer outcomes; - discussion on deprivation index to estimate cancer survival by social class. Focal point: INT AP: INT, INSERM, INRC Collaboration with OECI, FAVO, OECD and IARC. Bruxelles 8/12/2010

Aims of WP 9 To map the main sources of cancer data in Europe and to identify the priority topics to be supported by the Partnership. To unify under a common platform cancer burden indicators (incidence, mortality, survival and prevalence) provided by existing European activities. To promote a European task force aimed to discuss the need for data on cancer costs and to produce an inventory of relevant available information. To initiate a development of a standardised approach to the routine collection of data on survivorship using population based cancer registries. To develop an inventory of statistical methods to analyse population based cancer data. Bruxelles 8/12/2010

ability to get health care and follow up treatment, SURVIVORSHIP physical, psychosocial, and economic issues of cancer, from diagnosis until the end of life, beyond the acute diagnosis and treatment phase quality of life of cancer survivors, including social, familiar, sexual and emotional aspects. ability to get health care and follow up treatment, late effects of treatment. A standardised approach to the routine collection of survivorship data using population based cancer registries in various European countries will be studied Focal point: INT, in collaboration with IARC, patients’ organizations (FAVO, ECPC), international and national networks (OECI, ACC) and stakeholders. Bruxelles 8/12/2010

Aims of WP 9 To map the main sources of cancer data in Europe and to identify the priority topics to be supported by the Partnership. To unify under a common platform cancer burden indicators (incidence, mortality, survival and prevalence) provided by existing European activities. To promote a European task force aimed to discuss the need for data on cancer costs and to produce an inventory of relevant available information. To initiate a development of a standardised approach to the routine collection of data on survivorship using population based cancer registries. To develop an inventory of statistical methods to analyse population based cancer data. Bruxelles 8/12/2010

POPULATION BASED STATISTICAL ANALYSIS: trend and projections analysis, national estimates of incidence in countries with limited registry coverage, survival analysis, prevalence estimates, cross- analysis between incidence and survival indicators and Health Care System and socio-economic indicators. A European network on data analysis will allow to start building a European capacity for statistical analysis, projections and forecasting epidemiological cancer indicators A panel of experts in population based data analyses, projections and forecasting will be identified by ISS and IARC in consultation with ENCR and other subjects. Focal point: ISS, in collaboration with with ENCR, FRANCIM, IARC, IKNE, INT Bruxelles 8/12/2010

WP 9 PLANNED ACTIVITIES FOR 2011 Meetings/Working groups between ENCR, EUROCOURSE, EUROCARE members to revise the availability of incidence, survival, survivorship, prevalence and mortality data and to discuss a common platform to make available these indicators Revision of available data on population data patterns of care at European level. Production of draft protocol for unifying data collection on patterns of cancer care in Europe Meeting with experts in population based statistical analysis Preparation of the prototype of a common website with all cancer indicators available in EU Production of updated cancer survival data for patients diagnosed after 2000 in Europe (EUROCARE-5) Bruxelles 8/12/2010

WP 9 PLANNED ACTIVITIES FOR 2011 Cancer costs March 2011: meeting with OECD in order to individuate experts across Europe and possibility to contact them through OECD Revision of existing data/databases on Cancer cost Cancer across Europe Meetings/Working groups focussed on methods to estimate population based cancer costs May 2011: meeting with INRC (Genoa Institute) to organize the collection of data for regression analysis between socioeconomic variables (at cancer registry level) and survival June 2011: meeting (or conference call) with ERI3 INSERM (France institute) in order to discuss activity on deprivation indexes and their comparability across countries Bruxelles 8/12/2010

WP-9 ASSOCIATED PARTNERS INT – Fondazione IRCCS “Istituto Nazionale Tumori” – Milano - Italy ISS – Istituto Superiore di Sanità – Italy - Rome INRC – Istituto Nazionale Ricerca sul Cancro – Genoa - Italy ERI3 INSERM – France IKNO – Integraal Kankercentrum Noord-Oost - The Netherlands IOL – Institute of Oncology Ljubljana - Slovenia Bruxelles 8/12/2010