A review of the different reporting systems for occupational diseases in

the European countries participating in Modernet.

COST Action IS1002 Modernet

Melanie Carder, Lynda Bensefa-Colas, Elisaveta Stikova, Stefano Mattioli, Peter Noone, Yogindra Samant, Kieran Sludds, Maylis Telle-Lamberton, Madeleine Valenty, Axel

Wannag

Brussels meeting, 3rd-4th December 2013

Background

• Occupational diseases (ODs) and work-related injuries (WRI) impose a heavy burden on both workers and employers and represent enormous economic costs.

• In general the information on incidence and prevalence of occupational diseases is rather poor and fragmented.

• There is an urgent need to improve that, but in particular to develop methods and instruments to trace new and emerging occupational health (OH) risks.

• The EU strategy for health and safety at work 2007-2012 underlined the need to reduce the incidence of ODs

• A prerequisite for realization of this new EU policy is a reliable and comparable system for monitoring ODs that makes it possible to determine Europe wide trends using consistent methodology

Monitoring trends in Occupational Diseases and tracing new and Emerging Risks in a NETwork

• Modernet started in 2007 with early participation by the Netherlands, the UK, France and Italy.

• In 2010 Modernet gained COST (European Cooperation in Science and Technology) funding and currently 19 countries within the EU participate

• Modernet aims to be able to detect and validate new OH risks at an early stage by collaboration on a European scale and to facilitate the exchange of information and knowledge/serve as a European intelligence centre for providing strategic information on work-related and occupational diseases

• 4 working groups: WG1 Quality of data, WG2 trends analysis, WG3 tracing new risks, WG4 dissemination

WG1: Quality of data

Split into 5 sub-groups, each dealing with a different topic related to data quality

WG 1.2 Aim: To study the differences in the reporting systems of occupational diseases (ODs)* used in the different Modernet countries

Specific objectives

– To prepare an article intended for peer review comparing the different OD systems

– To develop an interactive tool(s) to be hosted on the modernet website enabling users to visualise/compare the OD systems

– To identify a ‘core scheme’ with adapted nomenclatures and possible transcoding from existing systems to a common tool (WG1.5)

*For the purpose of this exercise the term occupational disease is used to encompass occupational disease/work-related ill-health /work-related illness

Systems for monitoring ODs

• There are two types of systems for reporting occupational diseases: those based on claims for recognition and compensation administered by the national social security systems, and those based on an independent/epidemiological system*

• Some Countries will have the first system, others the second and some may have several registers of both types

• A questionnaire was sent out to all participants in Modernet asking them to provide information about each of the different systems in their country

* European Commission report: http://www.ec.europa.eu/social/BlobServlet?docId=9982&langId=en

The questions

General • Website address • Brief overview of the system • Modernet ‘contacts’ • Start date

‘Aims’ of the system

• Is the system linked to compensation? • If yes, is there a list of compensated WRI? • If no, is the information on compensated diseases registered elsewhere? • Who reports? • Criteria for reporting • Are cases medically diagnosed? • Does the system (aim) to measure incidence, prevalence or both? • Does the system (aim) to cover all geographical areas? • Does the system (aim) to cover all economic sectors? • Has the population covered by the physicians been quantified? • Has the degree of under-reporting been quantified?

What variables are reported?

• Diagnosis • Individual susceptibility (e.g. pre-existing asthma) • Date case diagnosed • Date case reported • Symptoms • Date of onset of symptoms • Age at diagnosis • Age at reporting • Date of birth • Gender • Place of birth • Address of the worker • Address of the workplace • Occupation • Economic sector • Exposures (how is exposure described, is the duration of exposure recorded, is the level of imputability assessed (and if so, by whom)) • Any other non-occupational factors?

Nomenclature • Diagnosis • Occupation • Economic sector • Exposures • Who codes the data?

WG 1.5

Participating countries

UK

Republic of Ireland

Iceland

Spain

France

Norway

Finland

Italy

Belgium

Romania

The Netherlands

Germany

Czech Republic

Albania

Macedonia

Croatia

Bosnia & Herzegovina

Malta

Switzerland

Please note

The information presented here does not purpose to be a complete representation of all the different systems for monitoring ODs in the Modernet countries Not all countries participating in Modernet have returned information and for those that have, they may not have returned information for all of the OD systems collecting data in their country Information on further systems is anticipated

Compensation based systems

• Information returned for a total of 11 systems: Belgium, Czech Republic, Finland, France, Germany, Republic of Ireland, Italy, Norway, Spain, Switzerland, UK

• Iceland and Malta: replied that no formal system exists

• The Netherlands and Macedonia: returned information for independent/epidemiological systems only

• Awaiting information from the remaining 4 countries

Independent/epidemiological systems Country System

Finland Finnish Register of Occupational diseases

France • La prévention des troubles musculo-squelettiques (TMS) • The French National Program for Mesothelioma Surveillance (PNSM) • Observatoire National des Asthmes Professionnels (ONAP 2) • Surveillance programme of WRD (WRD) • Réseau national de vigilance et de prévention des pathologies professionnelles (rnv3p) • rnv3p-SST

Republic of Ireland

• The Health and Occupation Research (THOR) network (SWORD, EPIDERM, OPRA) • Central Statistics Office quarterly survey

Italy Malprof surveillance system of occupational diseases

Macedonia Register of Occupational Diseases

The Netherlands National notification and registration system

Norway • Registry of Work-Related Diseases, Illnesses, and Disorders at the Labour Inspectorate • Registry of outpatients examined by the Norwegian occupational medicine

departments

Spain Cepross

UK • THOR (SWORD, EPIDERM, OPRA, THOR-GP, SIDAW) • Self- reported Work related Illness survey (SWI), • RIDDOR

Date range of computated data for independent systems

Finland - Finnish Register of Occupational Diseases

France - TMS

France - PNSM

France - WRD

France - rrnv3p

France - rnv3p-SST

Ireland - SWORD

Ireland - EPIDERM

Ireland - OPRA

Italy - Malprof

Macedonia - National register

Netherlands - National register

Norway - Labour Inspectorate Norway - The OM Clinics’

registry

UK - SWORD

UK - EPIDERM

UK- OPRA

UK-SIDAW

UK - SWI

UK - RIDDOR

Spain - Cepross

Who reports (all systems)?

23, 72%

3, 9%

6, 19%Physicians

Employers

Employees

Number of schemes forwhich an asswer wasprovided = 31

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Belgium FBZ

Czech Registry

Finland Register

France CNAM-TS

France TMS

France PNSM

France ONAP2

France WRD

France RNV3P

Germany DGUV

Ireland DSP

Ireland CSO

Ireland Injuries

Ireland THOR

Italy Malprof

Macedonia Register

Netherlands

Norway Labour Inspectorate

Norway OM clinic register

Spain

UK THOR

UK SWI

UK RIDDOR

UK IIDB

What types of OD can be reported?

Any type of OD

I I B N I P I B I I N N N I I I I B

• Belgium: Fonds Voor de Beroepszieketen (FBZ) • Finland: Finnish Register of Occupational Disease • France: Surveillance programme of WRD (WRD) • France: Réseau national de vigilance et de prévention des

pathologies professionnelles (rnv3p) • France: rnv3p-SST • German statutory accident insurance (DGUV) • Ireland: Occupational Physicians Reporting Activity (OPRA) • Ireland: Central Statistics Office quarterly survey • Ireland: Injuries Board (not psychosocial) • Italy: The Malprof surveillance system of occupational diseases • Norway: The Occupational Medicine Clinics’ registry • Norway: The Labour Inspectorate’s Registry of Work-Related

diseases, illnesses & disorders • Norway: Registry of Private Insurers • Spain: Cepross • The Netherlands: National notification and registration system • UK: OPRA • UK: THOR in General Practice (THOR-GP) • UK: Self- reported Work-related Illness survey (SWI)

I = Incidence, P= Prevalence, B= Both, N=Neither

What types of OD can be reported? Only those on a prescribed list

I I B I I

• Czech Registry of Occupational Disease • Ireland: Prescribed occupational illnesses, Department of Social

Protection (DSP) • Macedonia: Register of Occupational Diseases • UK: The Reporting of Injuries, Diseases, and Dangerous Occurrences

Regulations • UK: (RIDDOR)Industrial Injuries Disablement Benefit (IIDB) scheme

Only respiratory

I I I I

• The French National Program for Mesothelioma Surveillance (PNSM)

• France: Observatoire National des Asthmes Professionnels (ONAP 2) • Ireland: Surveillance of Work Related Respiratory Disease (SWORD) • UK: SWORD

Only skin I I • Ireland: Occupational skin surveillance (EPIDERM) • UK: EPIDEM

Only MSDs B • France: La prévention des troubles musculo-squelettiques (TMS)

Other I • UK: Surveillance of Occupational Diseases at Work (SIDAW)

I = Incidence, P= Prevalence, B= Both, N=Neither

Coverage (all systems) Does the system (aim to) cover all geographical areas? • 83% yes • 17% no Does the system (aim to) cover all economic sectors? • 83% yes • 17% yes except self-employed Has the population covered by the system been quantified? • 17% no • 83% yes/partly

Has the degree of under-reporting been quantified? • 38% no • 62% yes/partly

Information returned for 29 systems

Next steps

Preparation of paper for peer review

– A comparison of the different systems for reporting ODs

– Thinking of a ‘core’ scheme with adapted nomenclatures (WG1.5) and possible transcoding from existing systems to a common tool?

Online tool (interactive map/database) to enable users to visualise/ compare systems

http://www.costmodernet.org/EuropeanRegistries

Reserve slides

Why would this be useful?

So we know what is being collected by others

• 18 countries currently participating in Modernet

• Each country may have more than 1 system

• Useful to describe each system and make this information readily available to all Modernet members

So we can identify/work towards a ‘common’ system • What are the ‘core’ variables required for an OD system? • What classification systems should be used? (WG1.5) • Help inform countries wanting to set up new systems

Date range of computated data for systems based on compensation

UK - Industrial Injuries Disablement Benefit (IIDB)

scheme

Swiss National Insurance Fund

Spanish National Institute of Hygiene and Security at work

Ireland - Department of Social Protection (DSP)

Norweigan Labour and Welfare administration

Italian Fund for Occupational Injuries and Diseases (INAIL)

German statuatory accident insurance (DGUV)

France - CNAM-TS-MP Occupational Disease

Finnish Register of Occupational Diseases

Czech Registry of occupational disease

Belgium - Fonds Voor de Beroepszieketen (FBZ)

Date range of computated data (all systems) Belgium - Fonds Voor de Beroepszieketen (FBZ)

Czech Registry of occupational disease

Finland - Finnish Register of Occupational Diseases

France - TMS

France - The French National Program for Mesothelioma Surveillance (PNSM)

France - Observatoire National des Asthmes Professionnels (ONAP 2)

France - Surveillance programme of WRD (InVS)

France - Réseau national de vigilance et de prévention des pathologies professionnelles (rnv3p)

France - rnv3p-SST

German statuatory accident insurance (DGUV)

Ireland - Prescribed occupational illnesses, Department of Social Protection (DSP)

Ireland - Injuries Board

Ireland - Sureveillance of Occupational Respiratory Disease (SWORD)

Ireland - Occupational Skin Surveillance (EPIDERM)

Ireland - Occupational Physicians Reporting Activity (OPRA)

Italy - Malprof surveillance system of occupational diseases

Macedonia - Register of Occupational Diseases

Netherlands - National notification and registration system

Norway - Registry of Prvate Insurers

Norway - The Labour Inspectorate’s Registry

Norway - The Occupational Medicine Clinics’ registry UK - SWORD

UK - EPIDERM

UK- OPRA

UK-THOR in General Practice (THORGP)

UK-Surveillance of Infectious Diseases at Work (SIDAW)

UK - Self- reported Work-related Illness survey (SWI)

UK - The Reporting of Injuries, Diseases, and Dangerous Occurrences Regulations (RIDDOR)

UK - Industrial Injuries Disablement Benefit (IIDB) scheme

Modernet working groups

Working Group Name Aim

1 Quality of data Improvement of the quality of data collection in occupational diseases

2 Trends analysis New techniques for analysis of trends in occupational diseases

3 Tracing new risks New techniques for tracing newly occurring occupational diseases

4 Dissemination

Dissemination and implementation of new knowledge on occupational diseases

WG1: Quality of data

Split into 5 sub-groups

1.1 To evaluate the effect of interventions aimed at increasing the reporting of occupational diseases

1.2 To study the differences in the reporting systems of occupational diseases used in different European countries

1.3 To increase the quality in collecting literature data on occupational diseases: a repository of useful search strings

1.4 To define the level of evidence needed to scientifically define a disease as a new work-related disease

1.5 To study the nomenclature utilised in the different databases of occupational diseases

Aims and objectives of WG1.2

The aim of WG1.2 is to compare the different systems for monitoring occupational disease (OD)* in the Modernet countries Specific objectives

– To prepare an article intended for peer review comparing the different OD systems

– To develop an interactive tool(s) to be hosted on the modernet website enabling users to visualise/compare the OD systems

– To identify a ‘core scheme’ with adapted nomenclatures and possible transcoding from existing systems to a common tool (WG1.5)

*For the purpose of this exercise the term occupational disease is used to encompass occupational disease/work-related ill-health /work-related illness

Compensation based systems Country System

Albania Awaiting information

Belgium Fonds Voor de Beroepszieketen (FBZ)

Bosnia & Herzegovina Awaiting information

Croatia Awaiting information

Czech Republic Czech Registry of Occupational Disease

Finland Finnish Register of Occupational diseases

France CNAM-TS-MP Occupational Disease (private sector employees-Social Security)

Germany German statutory accident insurance (DGUV)

Iceland No formal system exists*

Republic of Ireland Prescribed occupational illnesses, Department of Social Protection (DSP)

*ODs that are the results of conditions due to substances, radiation or similar, prevailing only for a short period of time, should be

compensated as occupational accidents. The minister should state in a regulation which occupational disease fall under this

provision. No such regulation exists, and no diseases are listed for reference. Further compensation for these diseases and ODs

caused by other factors are only compensated through civil court cases between the employee and employer.

Compensation based systems Country System

Italy Italian Institute for the insurance against work accidents (INAIL)

Macedonia No system linked to compensation (only independent system)

Malta No formal system exists*

The Netherlands There is no specific OD System in the Netherlands regarding compensation

Norway Register of Occupational diseases at the Norwegian Labour and Welfare Administration (Social Security)

Romania Awaiting information

Spain Spanish National Institute of Social Security (INSS)

Switzerland Swiss National Accident Insurance Fund**

UK Industrial Injuries Disablement Benefit (IIDB) scheme

*The Maltese Occupational Health and Safety Authority (OHSA) ask medics to register ODs. This data collection is run by the

National Statistics Office but returns are very low and cases of ODs are typically picked up from secondary sources such as the

cancer registry

** Currently awaiting information. Both countries only recently became active members of Modernet.

Independent/epidemiological systems Country System

Albania Awaiting information

Belgium Information returned for compensation based system only

Bosnia & Herzegovina Awaiting information

Croatia Awaiting information

Czech Republic Information returned for compensation based system only

Finland Finnish Register of Occupational diseases

France • La prévention des troubles musculo-squelettiques (TMS) • The French National Program for Mesothelioma Surveillance

(PNSM) • Observatoire National des Asthmes Professionnels (ONAP 2) • Surveillance programme of WRD (WRD) • Réseau national de vigilance et de prévention des pathologies

professionnelles (rnv3p) • rnv3p-SST

Germany Information returned for compensation based system only

Iceland No formal system exists

Independent/epidemiological systems

Country System Republic of Ireland

• The Health and Occupation Research (THOR) network (SWORD, EPIDERM, OPRA)

• Central Statistics Office quarterly survey

Italy Malprof surveillance system of occupational diseases

Macedonia Register of Occupational Diseases

Malta No formal system exists

The Netherlands National notification and registration system

Norway • Registry of Work-Related Diseases, Illnesses, and Disorders at the Labour Inspectorate

• Registry of outpatients examined by the Norwegian occupational medicine departments

Romania Awaiting information

Spain Cepross

Switzerland Awaiting information

UK • THOR (SWORD, EPIDERM, OPRA, THOR-GP, SIDAW) • Self- reported Work related Illness survey (SWI), • The Reporting of Injuries, Diseases, and Dangerous Occurrences Regulations

(RIDDOR)