EUROCHIP Health Indicators for Monitoring Cancer in Europe Health Monitoring Program (HMP) EUROPEAN COMMISSION HEALTH & CONSUMER PROTECTION DIRECTORATE-GENERAL.

EUROCHIPEUROCHIP

Health Indicators for Health Indicators for Monitoring Cancer in EuropeMonitoring Cancer in Europe

Health Monitoring Program (HMP)Health Monitoring Program (HMP)EUROPEAN COMMISSIONEUROPEAN COMMISSION

HEALTH & CONSUMER PROTECTION DIRECTORATE-GENERALHEALTH & CONSUMER PROTECTION DIRECTORATE-GENERAL

Www.istitutotumori.mi.it/project/eurochip/homepage.htmWww.istitutotumori.mi.it/project/eurochip/homepage.htm

GROUP OF SPECIALISTS GROUP OF SPECIALISTS ononMACRO MACRO

SOCIAL-ECONOMICSOCIAL-ECONOMICVARIABLESVARIABLES

Paris, 5th-6th December 2002Paris, 5th-6th December 2002

EUROCHIPEUROCHIP

Chairperson: Dr Juliette Bloch

EUROCHIP PROJECT:EUROCHIP PROJECT:PRESENTATIONPRESENTATION

Dr. Andrea Micheli

EUROCHIP INTRODUCTIONEUROCHIP INTRODUCTIONAIM: To produce a list of health indicators which describe cancer in Europe, to help the development of the future European Health Information System

STEP 1 (Jan 2002 – Jul 2002) : To discuss a preliminary list at national level, in all members of the European Union. The result was a list of more than 100 indicators subdivided by priority level

STEP 2 (Sep 2002 – Dec 2002) : To discuss the indicators (of the list

produced at STEP 1) by different domain (prevention, epidemiology and cancer registration, screening, treatment and clinical aspects, and macro

social-economic variables). To discuss methodological problems for the indicators at high priority.

STEP 3 (Jan 2003 – May 2003) : Definition of the final list of indicators subdivided by domain and by priority level.


Comprehensive range of health indicators for cancer:

LIST LIST

OF OF

CANCERCANCER

INDICATORSINDICATORS

RISK FACTORS

PRE-CLINICAL ACTIVITY/ SCREENING

CLINICAL FOLLOW-UP

DIAGNOSTIC AND THERAPEUTIC PROCEDURES

CANCER RECURRENCE

AND MORTALITY

CANCER CARE/ PREVALENCE

SURVIVAL

OCCURENCE

Standardised methods for collecting, checking and validating the data will be proposed for each indicator

EUROCHIPEUROCHIPC

AM

ON

EU

RO

CA

RE

/EU

RO

PR

EV

AL



Steering CommitteeSteering Committee

Working TeamWorking Team

Operational work

Panel of ExpertsPanel of Experts

Discussion & organization at national level

Methodological GroupMethodological Group

Methodological aspects of the indicators

GS: Groups of specialistsGS: Groups of specialists

Discussion of indicators at national and domain level

GSGS

GSGS

GSGSGSGSGSGS

GSGS

GSGS

FRAMEWORK OF THE PROJECTFRAMEWORK OF THE PROJECT


130130 CANCER SPECIALISTS ARE INVOLVED IN EUROCHIP

1717 INTERNATIONAL MEETINGS HELD

ALLALL COUNTRIES OF THE EUROPEAN UNION ARE PARTICIPATING IN THE PROJECT

FIRST AND FUTURE STEPSFIRST AND FUTURE STEPS

Next steps: Groups of Specialists in each of five domains (prevention, screening, data registration and epidemiology, macro-health variables, and clinical aspects and treatment) discuss the indicators at the European level. Final meeting at which the final selection of indicators will be drawn up


RESULTSRESULTS

PRELIMINARY LIST OF 158158 INDICATORS

3939 INDICATORS AT HIGH PRIORITY

For each indicator we compile a FORMFORM subdivided in three sections:

DESIRED INDICATORDESIRED INDICATOR: all indicator characteristics we wish to have METHODOLOGYMETHODOLOGY: operational definition, possible sources and methodological issues AVAILABILITYAVAILABILITY in different countries

EUROCHIP MEETINGSEUROCHIP MEETINGS

LIST OF INDICATORSLIST OF INDICATORS

EUROCHIP FINAL RESULTSEUROCHIP FINAL RESULTS(AT THE END OF STEP 3)(AT THE END OF STEP 3)

For each indicator at high priority EUROCHIP will produce:

1. A DESCRIPTIVE FORM DESCRIPTIVE FORM including:

• Desired indicators characteristics (definition, use, caveat …)

• Operational definition and indications on sources

• Indications on availability in all EU member countries

2. A METHODOLOGICAL FORM METHODOLOGICAL FORM including:

• Methodological aspects (standardisation, validity, variability)

• Bibliography on the indicator

• Suggestions to the European Commission


INTRODUCTION INTRODUCTION TO THE TO THE

MEETINGMEETING

Dr. Julietta Bloch

AIMS OF THE MEETINGAIMS OF THE MEETING

• Discussion on the complete list of the indicators

• An updated list of indicators for “macro social-economic variables” domain

• A consensual classification of these indicators by priority

• Information on sources for indicators at high priority

• Discussion on validity and standardization of indicator at high priority

• Study of the realization of the indicator “Total Total Expenditure on health for cancer”Expenditure on health for cancer”

CONSIDERATIONSCONSIDERATIONSParticipants have to consider that:

• indicators at high priority should be in a limited number; • indicators should be able to suggest actions to reduce inequalities and to promote health; • indicators should refer to the “macro social-economic” domain• indicators have been developed considering 3 axes:

1) the natural disease’s history (prevention, screening, diagnosis, treatment, surveillance, end results)

2) indicator groups as suggested by the ECHI HMP project (demographic and social-economic factors,

health status, determinant of health, health system)

3) cancer sites

THOROUGHNESS THOROUGHNESS OF THE OF THE

INDICATOR LISTINDICATOR LIST

Dr. Andrea Micheli

LIST OF EUROCHIP HIGH PRIORITY INDICATORSLIST OF EUROCHIP HIGH PRIORITY INDICATORS

Tobacco consumptionTobacco consumptionExposure to asbestosExposure to asbestos

PREVENTIONPREVENTION

Breast cancer screening coverageBreast cancer screening coverageCervical cancer screening coverageCervical cancer screening coverage

Colo-rectal cancer screening coverageColo-rectal cancer screening coverageOrganised screening process indicatorsOrganised screening process indicators

SCREENINGSCREENING

Interval between diagnosis Interval between diagnosis and first treatmentand first treatmentPatients treated by surgery / Patients treated by surgery / chemotherapy / radiotherapychemotherapy / radiotherapyRadiation equipmentRadiation equipment% of centres with at least % of centres with at least 2 radiation equipments2 radiation equipmentsCAT equipmentCAT equipmentCompliance with guidelinesCompliance with guidelinesPalliative care teamsPalliative care teams

TREATMENT AND CLINICAL ASP.TREATMENT AND CLINICAL ASP.

Coverage of cancer registrationCoverage of cancer registrationStage at diagnosisStage at diagnosis

Person-years life lost due to cancerPerson-years life lost due to cancerCompleteness of the registrationCompleteness of the registration

EPIDEMIOLOGY AND CANCER REG.EPIDEMIOLOGY AND CANCER REG.

Total National Expenditure Total National Expenditure on Health for canceron Health for cancerTotal Public Expenditure Total Public Expenditure on Health for canceron Health for cancer

MACRO SOCIAL-MACRO SOCIAL-ECONOMIC VARIABLESECONOMIC VARIABLES


PREVENTIONPREVENTION1) Tobacco consumptionTobacco consumption2) Consumption of fruit and vegetable *3) Consumption of alcohol *4) Body Mass Index *5) Exposure to asbestosExposure to asbestos6) AIDS incidence *7) Prevalence of hepatitis B/C *EPIDEMIOLOGY AND CANCER REGISTRATIONEPIDEMIOLOGY AND CANCER REGISTRATION8) Coverage of cancer registrationCoverage of cancer registration9) Incidence rates *10) Survival rates *11) Prevalence proportion *12) Mortality rates *13) Stage at diagnosisStage at diagnosis14) Person-years life lost due to cancerPerson-years life lost due to cancer15) Completeness of the registrationCompleteness of the registration (DCO and Incidence / mortality)16) % of microscopically cases *

INDICATORS AT HIGH PRIORITY (1)INDICATORS AT HIGH PRIORITY (1)

* Connected with other HMP projects



SCREENINGSCREENING

17) Breast cancer screening coverageBreast cancer screening coverage18) 18) Cervical cancer screening coverageCervical cancer screening coverage19)19) Colorectal cancer screening coverageColorectal cancer screening coverage20)20) Organized screening process indicatorsOrganized screening process indicators

TREATMENT AND CLINICAL ASPECTSTREATMENT AND CLINICAL ASPECTS

21) Interval between diagnosis and first treatmentInterval between diagnosis and first treatment22) Radiation equipmentRadiation equipment23) % of centres with at least 2 radiation equipments% of centres with at least 2 radiation equipments24) CAT EquipmentsCAT Equipments25) Compliance with guidelinesCompliance with guidelines26) Patients treated by surgery / chemotherapy / radiotherapyPatients treated by surgery / chemotherapy / radiotherapy27) Palliative care teamsPalliative care teams



MACRO SOCIAL-ECONOMIC VARIABLESMACRO SOCIAL-ECONOMIC VARIABLES

28) Education level attained *29) Average Income *30) Gini level *31) Gross Domestic Product *32) Total Social Expenditure *33) Total National Expenditure on Health *34) Total National Expenditure on Health for cancerTotal National Expenditure on Health for cancer35) Total Public Expenditure on Health *36)36) Total Public Expenditure on Health for cancerTotal Public Expenditure on Health for cancer37) Expenditure on primary cancer prevention37) % elderly in 2010-2020-2030 *38) Age distribution of population *

* Connected with other HMP projects

PRIORITYPRIORITYLEVELSLEVELS

Dr. Juliette Bloch

PRIORITY LEVELSPRIORITY LEVELS

AA Direct indicator – Important – With or without any problem

BB Indirect indicator – Important – With or without any problem

C C Potentially useful but with presenting a great deal of problems

D D Very low priority – Irrelevant

DO YOU WANT SOMETHING ELSE DO YOU WANT SOMETHING ELSE AT HIGH PRIORITY?AT HIGH PRIORITY?

MACRO SOCIAL-ECONOMIC VARIABLESMACRO SOCIAL-ECONOMIC VARIABLES

Education level attained *Deprivation index *Income *Gross Domestic Product *Total Social Expenditure *Total National Expenditure on Health *Total National Expenditure on Health for cancerNational Expenditure on Health for cancerTotal Public Expenditure on Health *Total Public Expenditure on Health for cancerTotal Public Expenditure on Health for cancer% elderly in 2010-2020-2030 *Age distribution of population *

INDICATORS ATINDICATORS ATHIGH PRIORITYHIGH PRIORITY

SOURCESSOURCES::OECD Health Data 2000, Health for AllOECD Health Data 2000, Health for All

INDICATORS AT HIGH PRIORITY INDICATORS AT HIGH PRIORITY

For each indicator we have to discuss onFor each indicator we have to discuss on

• Availability

• Validity

• Standardization

INDICATOR 1: EducationINDICATOR 1: Education level attainedlevel attained

FROM: OECD Health Data 2000

Educational attainment is expressed as the percentage of the adult population (25 to 64 years old) that has completed a certain highest level of education defined according to the ISCED system. Data on years before 1998 refer to the old ISCED classification.

ISCED-97ISCED-97(in parenthesis the eventual differences with old ISCED)

- ISCED 0 = Education preceding the first level (pre-primary)- ISCED 1 = Education at the first level (primary)- ISCED 2 = Education at the lower secondary level- ISCED 3 = Education at the upper secondary level- ISCED 4 = post secondary, non-tertiary level. (before 1998 included in ISCED 3 or 5)- ISCED 5b = Programmes at the tertiary level that focus on practical, technical or occupational skills for direct entry into the labour market. (ISCED-76: level 5)- ISCED 5a = Programmes at the tertiary level equivalent to university programmes. (ISCED-76: level 6)- ISCED 6 = Advanced research programmes at the tertiary level, equivalent to PhD programmes. (ISCED-76: level 7)

INDICATOR 2: Income by decileINDICATOR 2: Income by decile

FROM: OECD Health Data 2000This indicator of inequality is based on a division of households in ten groups (or deciles), where the 1st decile represents households with the lowest total disposable incomes. The data provides the percentage of total income obtained by each decile.

NoteNote: a household is defined as a collection of individuals, who are sharing the same housing unit. Each household is weighted by the number of individuals who belong to this household. The total household income is defined as the total disposable income (including all incomes, taxes, and benefits). Individuals are ranked according to their household total disposable income per equivalent household

INDICATOR 3: Gini levelsINDICATOR 3: Gini levels


'Gini levels' is a commonly-used summary indicator of income inequality in a population. It can either be presented as a 'coefficient' ranging from 0 to 1 or (if multiplied by 100, as done in this database) as a 'level' ranging from 0 to 100.

NoteNote: a Gini level which is increasing towards 100 means that the distribution of income is becoming more unequal, while a gini coefficient that is declining towards 0 means a more equal income distribution.

INDICATOR 4: Gross domestic productINDICATOR 4: Gross domestic product


Gross Domestic Product (GDP) is defined as total domestic expenditure plus exports and less imports of goods and services.

A statistical discrepancy factor is included too.

INDICATOR 4: Gross domestic productINDICATOR 4: Gross domestic productFROM: Health for All

INDICATOR 5: Total social expenditureINDICATOR 5: Total social expenditure


Social expenditure is the provision by public (and private) institutions of benefits to, and financial contributions targeted at, households and individuals in order to provide support during circumstances which adversely affect their welfare, provided that the provision of the benefits and financial contributions constitutes neither a direct payment for a particular good or service nor an individual contract or transfer. Such benefits can be cash transfers, or can be the direct ('in-kind') provision of goods and services.

Note: The collection of social expenditure and of health accounts are at present only partially harmonised.

INDICATOR 6: Total expenditure on healthINDICATOR 6: Total expenditure on healthFROM: OECD Health Data 2000 Total (or national) expenditure on health is based on the following identity and functional boundaries of medical care :TPHE = Total personal expenditure on health =

Personal health care services + Medical goods dispensed to out-patients

TCHE = Total current expenditure on health = TPHE +

Services of prevention and public health + Health administration and health insurance

TEH = Total expenditure on health = TCHE + Investment into medical facilities

Source: ICHA-proposal (OECD International Classification for Health Accounts)

Total expenditure on health: Sources & MethodsTotal expenditure on health: Sources & MethodsFROM: OECD Health Data 2000Sources and methodological remarks listed below for total expenditure on health in general apply to sub aggregates (e.g. public expenditure, total/public investment on medical facilities) as well.Data for recent years are partially Secretariat estimates (see sources by country). The OECD Secretariat retains the overall responsibility for these estimates. Although, there are various sources in many countries for estimating public expenditure on health, it is usually more difficult to assess growth rates of private expenditure on health. This can be critical in years of major changes in the public/private mix of health care financing, e.g due to significant increases of co-payments.

INDICATOR 6: INDICATOR 6: Total expenditure on healthTotal expenditure on healthFROM: Health for All

INDICATOR 7: INDICATOR 7: Public expenditure on healthPublic expenditure on health


Publicly funded health care by both publicly and privately owned providers. Public funds are state, regional and local Government bodies and social security schemes. Public capital formation on health includes publicly-financed investment in health facilities plus capital transfers to the private sector for hospital construction and equipment and subsidies from government to health care service providers. It includes funds for state employees.

INDICATOR 7: INDICATOR 7: Public expenditure on healthPublic expenditure on healthFROM: Health for All

INDICATORS 4-5-6-7INDICATORS 4-5-6-7

Also other Databases are used OECD Definition

DISCUSSION ONDISCUSSION ON

• Validity

• Standardization

CONCLUSIONCONCLUSION

• Use OECD Indicators

TOTAL EXPENDITURE TOTAL EXPENDITURE ON HEALTH FOR CANCERON HEALTH FOR CANCER

PROPOSAL OF ESTIMATION PROPOSAL OF ESTIMATION

INTRODUCTIONINTRODUCTION

• Example based on the Italian situation

• First attempt to face the estimation of the indicator

• Information derived from Internet

ITALY: WHAT IS “SDO”?ITALY: WHAT IS “SDO”?

• SDO: Hospital discharge record• One SDO for each admission or day hospital into public or private care hospitals• SDO includes:

• Demographic data of the patient• Information on the care institution • Motivation of the admission• Principal diagnosis• Other eventual 5 Secondary diagnosis• Principal surgery• Other 5 eventual surgeries or diagnostic procedures

• No information on drugs and medicines

ITALY: WHO FILL “SDO”?ITALY: WHO FILL “SDO”?

• The compilation of the principal diagnosis is a task for the specialist

• The list of all diagnostic and therapeutic procedures is a task for both the doctors and the nurses

• Every 3 months the Institutes have to send all SDOs to their Region (or Province)

• Every 6 months the Regions (or Provinces) sent the SDOs to the Italian Health Ministry

ITALY: “SDO” and CANCERITALY: “SDO” and CANCER

• The principal diagnosis is the principal condition treated or studied during the admission or the condition that needed the most quantity of resources

• For the diagnosis ICD 9 and ICD 9 CM are used

• If the admission is intended to treat a cancer, this tumor is to be defined as principal diagnosis unless the admission is intended essentially to radiotherapy or chemotherapy.

• If radiotherapy/chemotherapy follows a surgical operation or are used to define the cancer stage the principal diagnosis is the cancer.

ALTERNATIVE 1ALTERNATIVE 1

• We should use the SDO registration

• We should define a “database of expenses” for each cancer diagnosis, surgery operations and other procedures

• This way we could link the SDO database (limited to cancer patients) with this expenses database to have the total expenditure for cancer hospitalisation

• This procedure is applicable only for those countries with a similar SDO system

• We should define a method to define cancer drug and prevention expenditures

DRG: Diagnosis Related GroupsDRG: Diagnosis Related Groups• The DRG is a classification system of the patients dismissed by the hospital

• Each patient is allocated to a specific DRG by a program called DRG-Grouper

• Using the “principal diagnosis” each patient is assigned to one of 25 MDCs (Major Diagnostic Category) that classify the diseases principally by organ. After this, there are other classifications inside each MDC.

• In total we have 489 different DRGs

• Each ICD 9 CM diagnosis is contained in a DRG

DRG characteristicsDRG characteristics

• The DRG are exhaustive and mutually exclusive

• Each admission has only one DRG

• The DRGs are homogeneous groups composed by non-identical patients

• Each DRG has one specific tariff that represents the average cost of the admission

• These tariffs are decided by Health Ministry considering personal costs, material use, machine depreciation and general costs.

• Regions could change these tariffs following particular needs

ESTIMATION OF THE INDICATORESTIMATION OF THE INDICATORUSING DRG USING DRG

• During the linkage between SDO and DRG the information on diseases is lost but the DRG Grouper, probably, attaches the patient code in its record

• This way we can link the two databases to estimate the expenditure for cancer relatively to hospital expenses

PROBLEMSPROBLEMS

• The DRG tariffs are average expenses and we should control if they are real

• This way we do not consider the expenses in cancer prevention and drugs

• Not all countries use DRG System

• How many countries have a registration system similar to Italian SDO?

ALTERNATIVE 2: PATIENT COURSEALTERNATIVE 2: PATIENT COURSE

• There are some quality control programmes (ABC and ABM: Activity Based Costing and Management) that study the course of a patient from the admission to the discharge

• We could study a sample of cancer patients, in each country, considering all phases of the patient admission and their corresponding expenses

• The survey will give the average expenditures for standard patient courses to multiply with the number of cancer patients with these courses (information derived from SDO)

EUROPEAN COMMISSIONEUROPEAN COMMISSIONPUBLIC HEALTHPUBLIC HEALTH

PROGRAMSPROGRAMS

Dr. Andrea Micheli

PUBLIC HEALTH PUBLIC HEALTH IN EUROPEIN EUROPE

• the European past and next strategy

FOCUS ON CANCER• past/present in HMP: EUROCHIP and CAMON

• next: Working Party

Priority areasPriority areas of of thethe public health programmepublic health programme

General health policy

Health determinants

Health threats

Health information

By Dr. Tapani PihaBy Dr. Tapani Piha

Health

information

Bringing programmes togetherBringing programmes together

Cancer

Injury

Health monitoring

Pollution

Aids

Rare diseases

-2002

2003-By Dr. Tapani PihaBy Dr. Tapani Piha

Health

information

Bringing programmes togetherBringing programmes together

Cancer

Injury

Health monitoring

Pollution

Aids

Rare diseases

-2002

2003-By Dr. Tapani PihaBy Dr. Tapani Piha

Public health programme Public health programme Implementation focusImplementation focus

• European added value • Large scale (in content and geographical

coverage) multi-annual and multidisciplinary• Leads to sustainable results and outputs• Relevant and contributes to policy development• Attention to the evaluation of the process and

results


Stages in data processingStages in data processing

Stage 1Data definition

andquality development

Stage 2Support to

data collection at national level

Stage 3Data collection, processing and

storage at EU level

Stage 4Analysis, advice,

reporting, informing and consulting

Stage 5Mechanisms for

exchanging, promoting and disseminating

results


DECISIONS DECISIONS OF THE OF THE

MEETINGMEETING

TOTAL EXPENDITURE FOR CANCERTOTAL EXPENDITURE FOR CANCER

It is very difficult to study all the expenditures on cancer together.

We decide to study proxy indicators for • prevention,• screening, • care• registration• research

EXPENDITURE FOR CANCER EXPENDITURE FOR CANCER PREVENTIONPREVENTION

Public Expenditure against tobacco:

this indicator is a good proxy for the public actions for cancer prevention

EXPENDITURE FOR CANCER EXPENDITURE FOR CANCER SCREENINGSCREENING

Public Expenditure for organized screening programmes:

It is quite easy to collect. This could be an extra information over the other screening indicators

EXPENDITURE FOR CANCER CAREEXPENDITURE FOR CANCER CARE

Good proxies for the cancer care expenditure could be:

• the pharmaceutical expenditure on chemotherapy specific to cancer drugs, on some adjuvant therapies specific to cancer (to list) and pain relief drugs

• the number of fractions delivered for radiotherapy (if it is possible by machine type)

• number of blood marrow transplants

EXPENDITURE FOR CANCER EXPENDITURE FOR CANCER REGISTRATIONREGISTRATION

expenditure on population-based cancer registration

EXPENDITURE FOR CANCER EXPENDITURE FOR CANCER RESEARCHRESEARCH

Good proxies for the cancer research could be:

• Public expenditure on cancer clinical trials not supported by pharmaceutical companies

• Fundamental research

• Contributions to International Organizations

EXPENDITURE OF PRIVATE/NON EXPENDITURE OF PRIVATE/NON PROFIT INSTITUTIONSPROFIT INSTITUTIONS

Expenditure subdivided by

• prevention (including screening),

• research and treatment (for example surgical facilities),

• registration

EUROCHIP Health Indicators for Monitoring Cancer in Europe Health Monitoring Program (HMP) EUROPEAN COMMISSION HEALTH & CONSUMER PROTECTION DIRECTORATE-GENERAL.

Documents

list of health indicators

eurochip health indicators

indicators gs

cancer slide

final list of indicators

updated list of indicators

indicator list

final selection of indicators