Transcript Cancer Information System

High Resolution Studies within the
European Cancer Information System
Cooperation with EPAAC
Riccardo Capocaccia
Istituto Superiore di Sanità (ISS), Italy
WP9 proposal for a European Cancer
Information System (ECIS)
Cancer Information System: the whole of institutions,
persons, procedures, and resources dealing with
cancer information and data, and coordinated to
provide the necessary knowledge to optimize cancer
control
activities
and
operate
infrastructure in public health.
as
research
Proposal for the ECIS structure
CONSORTIUM
CR data
Gateway
Data analysis task 1
Data Base
Management
Other data
collection
Data analysis task 2
Data analysis task 3
….
Research
Dataset
Standard
Results
Research Community
Results
diffusion and
dissemination
Developing ECIS: 1
Data Centralization
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Collection, organization and diffusion of the data
according to a unitary coherent design
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Preserving the logical connections between
different datasets and data items
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Accessibility to the whole database through a
unique entry
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Not necessarily a unique physical location, nor a
centralized ownership of the whole database
Developing ECIS: 2
Providing a sustained data analysis
capacity

Not only yearly updating of basic indicators
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Providing answers to evolving needs: new
questions, new topics
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Enrolling existing expertise in population
based epidemiological research
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Close involvement of research expertise also
in data quality control
Developing ECIS: 3
Legal status, commitment
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Running an information system mainly requires
connecting people: providers, analysts, users
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Removing barriers, building confidence
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ECIS existence, mission, and objectives should be
officially stated
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Involvement of EU and Member States
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Sustained funding
Developing ECIS: 4
Opening access
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Cancer (health) data come from the citizens
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Their collection is paid by the citizens
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Cancer information must be available to the
citizens and for citizens’ needs
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Legal constraints have to be taken into account
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Friendly procedures should be set up for the
widest data access and use
Developing ECIS. 1: centralizing the data
High detail
Clinical
Pharma
High Resolution
Cancer Registries
database
individual level
Mortality data
aggregated level
Demographic
Health Care System
Low detail
Socio Economic
Retrospective High Resolution
studies
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Use: interpretation of detected changes in space and time
of survival and incidence rates; answer specific questions
on the effect of diagnostic and therapeutic changes
Collection: on a project by project basis by cancer registries
for a representative sample from all patients
Ad hoc collection from past cases under a flexible design
and a common protocol
Content: very detailed information on stage, biology,
treatment, prognostic factors, lifestyle, socio-economic
status, comorbidity; clinical follow-up for late treatments
effects, quality of life, recurrences
Data immediately available for survival analysis
Prospective High Resolution data
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Use: up-to date monitoring of the public health impact of
cancer control measures and services provision
Collection: by cancer registries for a representative
sample from all patients
Systematic collection from future cases, under a
predefined design, a common protocol, and with a
sustained support
Content: detailed information on stage (basic diagnostic
procedures, some exams), biology (i.e. hormonal
receptors), and treatment (i.e. type of surgery, class of
chemotherapy)
Survival available only after a 3-5 years start-up period
Basic cancer patients’ data
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Use: descriptive analysis of incidence, prevalence
and survival
Collection: systematically collected by populationbased cancer registries for all patients
Content: demographic data, dates, site,
morphology, microscopic confirmation, extent of
disease
Extension to stage-TNM and type of treatment
can be pursued
Improving completeness and standardization
Population-based data
Coverage
Time
Information
detail
Retrospective High
Resolution
Sample
Episodical
High
Perspective High
Resolution
Sample
Continuous
Medium
Total
Continuous
Low
Type
Basic
Data from clinical registers
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Full patients’ data kept at single
hospitals/services for clinical management
purposes
Usually not representative of, or referable to,
the totality of patients of that cancer
Not directly and individually linkable to cancer
registry data
Consideration of demographic variables (age,
residence
Available for aggregate analysis
Conclusions
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High resolution data have a great importance for
the ECIS
Bridge the gap between simple description and
effective interpretation and public health use of
the cancer data
Need for a coordinated planning, collection and
organization of HR, also in connection with other
data sources
Sustained plan for a continuous, coordinated and
updated HR data collection: toward an ERA-Net
scheme ?
Conclusions
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The reorganization of cancer data collection, analysis and
diffusion in Europe through an effective Cancer Information
System has a huge potential impact on cancer control and
research activities
It is fundamental, to this aim, to involve the entire cancer
community: data providers, oncologists, patients,
researchers, health politicians and administrators, citizens
Stimulating and supporting the collaboration among these
different components for a common objective is the main
scope of EPAAC
The opportunity to build the new European Cancer
Information System is now: we must catch it