1. 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

2. 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

3. 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

4. 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 ( ) in the field of Cancer Information
Bruxelles 8/12/2010

5. 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

6. 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

7. 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

8. 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

9. - 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

10. 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

11. 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

12. 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

13. 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

14. 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

15. 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

16. 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