white book 2 task force torben sigsgaard for the fers meeting brussels april 2009
TRANSCRIPT
WHITE BOOK 2TASK FORCE
Torben Sigsgaard
For the FERS meeting Brussels April 2009
COPD in Europe
Preparatory group
Torben Sigsgaard Chair A6
Nikos Siafakas President elect
Peter Helms Advocacy Committee
Ben Nemery Scientific Committee
Jean-Luc Eiselé Lausanne Office
Content
Epidemiology Clinical picture of the diseases Health Economy Education and Training Advocacy part. Future directions
Epidemiology Assembly 6 epidemiology and occupational health will:
Oversee the epidemiological data, and by the use of databases available from EU, WHO and other bodies update the tables and charts in the WB.
Develop a reporting scheme and invite one person to contribute from each of the countries without existing information on the prevalence of respiratory diseases in Europe.
Provide the submission of this information in an orderly fashion before a given deadline these delegates will be invited to a meeting (2 - 3 days in a remote area with optimal conditions for scientific information exchange) where their information will be reviewed by two independent epidemiologists, and finally included if the quality is OK.
Arrange the above meeting with the Lausanne office
Health economy
We are aiming at a sensitivity analysis including best knowledge from a Western European and a former Eastern European country
Advocacy I The main messages from the White Book will be summarized in
an attractive, short booklet which will include the main messages from the report including: Burden of lung disease Health economic impact Clinical and research
challenges and opportunities to improve lung health through actions at EU level.
This summary booklet will be widely circulated and will be developed by a small advocacy team headed by the European Secretary, supported by the European Respiratory Society Public Relations Officer and Press Officer.
Translation into the main European languages will be performed with proposed responsibility for this resting with the European Lung Foundation.
Publishing
The major publication will be published on-line and downloadable for a small fee by ERS advocacy committee
A smal booklet will be produced in 4 languages to be distributed widely by ELF
The booklet will be published and freely downloadable from the ELF homepage.
A system should be established in order to facilitate translations into more languages by the Nat’l committees
RECRUITMENT OF THE PEOPLE TO DO THE WORK
An open invitation to membersfrom European Contries Experts from countries with good
data are asked to deliver updated national figures on diseases
Experts invited from No Data areas First priority QUALITY
No No DataData
Time plan epi & health economy
1 Establishing the group 2 Data gathering economy & epi 3 Meeting for epidemiologists 4 Writing 5 Review 6 Final editing 7 Printing 8 Presentation
Dec
Jan
Feb
Ma r
Ap r
May
Jun
Ju l
Aug
Sep
Oc t
Nov
Dec
Jan
Feb
Ma r
Ap r
May
Jun
Ju l
Aug
Sep
Oc t
April to July
Identify one person from each country Who can provide data on:
Asthma in childhood Asthma in adults Chronic obstructive pulmonary disease Interstitial lung diseases Sleep breathing disorders Cystic fibrosis Acute respiratory failure Pediatric respiratory disease
April to July
IARC will provide data on: Respiratory cancers
WHO and the assembly on infectons will provide data on: Respiratory infections Tuberculosis
From each country we need
Asthma in childhood Asthma in adults Chronic obstructive
pulmonary disease Interstitial lung diseases Sleep breathing disorders Cystic fibrosis Acute respiratory failure Pediatric respiratory
disease
XX
Second best
CiCityty
RegionRegion
Procedure
Identification of public healt specialist in each country
Registration at ERS-office
Instructions arrive from ERS
Data are reported
Data judged by: Completeness Quality Relevance
If of adequate quality and quantity
The specialist will be invited to an epidemiological workshop in July