EUROCHIP

1. EUROCHIP Health Indicators for Monitoring Cancer in Europe Health Monitoring Program (HMP) EUROPEAN COMMISSION HEALTH & CONSUMER PROTECTION DIRECTORATE-GENERAL Www.istitutotumori.mi.it/project/eurochip/homepage.htm

2. EUROCHIP GROUP OF SPECIALISTS on MACRO SOCIAL-ECONOMIC VARIABLES Paris, 5th-6th December 2002 Chairperson: Dr Juliette Bloch

3. EUROCHIP PROJECT: PRESENTATION Dr. Andrea Micheli

4. EUROCHIP INTRODUCTION AIM: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. Www.istitutotumori.mi.it/project/eurochip/homepage.htm

5. EUROCHIP Comprehensive range of health indicators for cancer: OCCURENCE RISK FACTORS LIST OF CANCER INDICATORS PRE-CLINICAL ACTIVITY/ SCREENING SURVIVAL CAMON EUROCARE/EUROPREVAL DIAGNOSTIC AND THERAPEUTIC PROCEDURES CANCER CARE/ PREVALENCE CANCER RECURRENCE AND MORTALITY CLINICAL FOLLOW-UP Standardised methods for collecting, checking and validating the data will be proposed for each indicator Www.istitutotumori.mi.it/project/eurochip/homepage.htm

6. FRAMEWORK OF THE PROJECT Steering Committee GS: Groups of specialists Discussion of indicators at national and domain level Working Team Operational work Panel of Experts Discussion & organization at national level Methodological Group Methodological aspects of the indicators GS GS GS GS GS GS GS Www.istitutotumori.mi.it/project/eurochip/homepage.htm

7. FIRST AND FUTURE STEPS 130CANCER SPECIALISTS ARE INVOLVED IN EUROCHIP 17 INTERNATIONAL MEETINGS HELD ALL COUNTRIES OF THE EUROPEAN UNION ARE PARTICIPATING IN THE PROJECT 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 Www.istitutotumori.mi.it/project/eurochip/homepage.htm

8. RESULTS For each indicator we compile a FORM subdivided in three sections: • DESIRED INDICATOR: all indicator characteristics we wish to have • METHODOLOGY: operational definition, possible sources and methodological issues • AVAILABILITY in different countries LIST OF INDICATORS PRELIMINARY LIST OF 158 INDICATORS EUROCHIP MEETINGS 39 INDICATORS AT HIGH PRIORITY Www.istitutotumori.mi.it/project/eurochip/homepage.htm

9. EUROCHIP FINAL RESULTS(AT THE END OF STEP 3) • For each indicator at high priority EUROCHIP will produce: • A DESCRIPTIVE FORM including: • Desired indicators characteristics (definition, use, caveat …) • Operational definition and indications on sources • Indications on availability in all EU member countries • A METHODOLOGICAL FORM including: • Methodological aspects (standardisation, validity, variability) • Bibliography on the indicator • Suggestions to the European Commission Www.istitutotumori.mi.it/project/eurochip/homepage.htm

12. INTRODUCTION TO THE MEETING Dr. Julietta Bloch

13. AIMS 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 • Expenditure on health for cancer”

14. CONSIDERATIONS • Participants 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

15. THOROUGHNESS OF THE INDICATOR LIST Dr. Andrea Micheli

16. LIST OF EUROCHIP HIGH PRIORITY INDICATORS EPIDEMIOLOGY AND CANCER REG. PREVENTION Coverage of cancer registration Stage at diagnosis Person-years life lost due to cancer Completeness of the registration Tobacco consumption Exposure to asbestos SCREENING TREATMENT AND CLINICAL ASP. Breast cancer screening coverage Cervical cancer screening coverage Colo-rectal cancer screening coverage Organised screening process indicators Interval between diagnosis and first treatment Patients treated by surgery / chemotherapy / radiotherapy Radiation equipment % of centres with at least 2 radiation equipments CAT equipment Compliance with guidelines Palliative care teams MACRO SOCIAL-ECONOMIC VARIABLES Total National Expenditure on Health for cancer Total Public Expenditure on Health for cancer

17. INDICATORS AT HIGH PRIORITY (1) PREVENTION 1) Tobacco consumption 2) Consumption of fruit and vegetable * 3) Consumption of alcohol * 4) Body Mass Index * 5) Exposure to asbestos 6) AIDS incidence * 7) Prevalence of hepatitis B/C * EPIDEMIOLOGY AND CANCER REGISTRATION 8) Coverage of cancer registration 9) Incidence rates * 10) Survival rates * 11) Prevalence proportion * 12) Mortality rates * 13)Stage at diagnosis 14) Person-years life lost due to cancer 15) Completeness of the registration(DCO and Incidence / mortality) 16) % of microscopically cases * * Connected with other HMP projects Www.istitutotumori.mi.it/project/eurochip/homepage.htm

18. INDICATORS AT HIGH PRIORITY (2) SCREENING 17) Breast cancer screening coverage 18) Cervical cancer screening coverage 19)Colorectal cancer screening coverage 20)Organized screening process indicators TREATMENT AND CLINICAL ASPECTS 21) Interval between diagnosis and first treatment 22) Radiation equipment 23) % of centres with at least 2 radiation equipments 24) CAT Equipments 25) Compliance with guidelines 26)Patients treated by surgery / chemotherapy / radiotherapy 27) Palliative care teams Www.istitutotumori.mi.it/project/eurochip/homepage.htm

19. INDICATORS AT HIGH PRIORITY (3) MACRO SOCIAL-ECONOMIC VARIABLES 28) Education level attained * Average Income * Gini level * 31) Gross Domestic Product * 32) Total Social Expenditure * 33) Total National Expenditure on Health * 34) Total National Expenditure on Health for cancer 35) Total Public Expenditure on Health * Total Public Expenditure on Health for cancer Expenditure on primary cancer prevention 37) % elderly in 2010-2020-2030 * 38) Age distribution of population * * Connected with other HMP projects Www.istitutotumori.mi.it/project/eurochip/homepage.htm

20. PRIORITY LEVELS Dr. Juliette Bloch

21. PRIORITY LEVELS ADirect indicator – Important – With or without any problem BIndirect indicator – Important – With or without any problem C Potentially useful but with presenting a great deal of problems D Very low priority – Irrelevant

22. DO YOU WANT SOMETHING ELSE AT HIGH PRIORITY? MACRO 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 cancer Total Public Expenditure on Health * Total Public Expenditure on Health for cancer % elderly in 2010-2020-2030 * Age distribution of population *

23. INDICATORS AT HIGH PRIORITY SOURCES: OECD Health Data 2000, Health for All

24. INDICATORS AT HIGH PRIORITY • For each indicator we have to discuss on • Availability • Validity • Standardization

25. INDICATOR 1: Educationlevel 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.

26. ISCED-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)

27. INDICATOR 2: Income by decile FROM: OECD Health Data 2000 This 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. Note: 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

28. INDICATOR 3: Gini levels FROM: OECD Health Data 2000 '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. Note: 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.

29. INDICATOR 4: Gross domestic product FROM: OECD Health Data 2000 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.

30. INDICATOR 4: Gross domestic product FROM: Health for All

31. INDICATOR 5: Total social expenditure FROM: OECD Health Data 2000 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.

32. INDICATOR 6: Total expenditure on health FROM: 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)

33. Total expenditure on health: Sources & Methods FROM: OECD Health Data 2000 Sources 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.

34. INDICATOR 6: Total expenditure on health FROM: Health for All

35. INDICATOR 7: Public expenditure on health FROM: OECD Health Data 2000 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.

36. INDICATOR 7: Public expenditure on health FROM: Health for All

37. INDICATORS 4-5-6-7 • Also other Databases are used OECD Definition • DISCUSSION ON • Validity • Standardization • CONCLUSION • Use OECD Indicators

38. TOTAL EXPENDITURE ON HEALTH FOR CANCER PROPOSAL OF ESTIMATION

39. INTRODUCTION • Example based on the Italian situation • First attempt to face the estimation of the indicator • Information derived from Internet

40. 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

41. 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

42. ITALY: “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.

43. ALTERNATIVE 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

44. DRG: 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

45. DRG 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

46. ESTIMATION OF THE INDICATOR 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

47. PROBLEMS • 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?

48. ALTERNATIVE 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)

49. EUROPEAN COMMISSION PUBLIC HEALTH PROGRAMS Dr. Andrea Micheli

50. PUBLIC HEALTH IN EUROPE the European past and next strategy FOCUS ON CANCER past/present in HMP: EUROCHIP and CAMON next: Working Party