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. GROUP OF SPECIALISTS on MACROSOCIAL-ECONOMICVARIABLES Paris, 5th-6th December 2002 EUROCHIP 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. Comprehensive range of health indicators for cancer: LISTOFCANCER INDICATORS INDICATORS 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 EUROCHIP CAMON EUROCARE/EUROPREVAL Www.istitutotumori.mi.it/project/eurochip/homepage.htm

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

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

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

9. EUROCHIP FINAL RESULTS (AT THE END OF STEP 3) For each indicator at high priority EUROCHIP will produce: DESCRIPTIVE FORM 1.A DESCRIPTIVE FORM including: Desired indicators characteristics (definition, use, caveat …) Operational definition and indications on sources Indications on availability in all EU member countries METHODOLOGICAL FORM 2.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 Total Study of the realization of the indicator Total Expenditure on health for cancer 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 diseases 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 Tobacco consumption Exposure to asbestos PREVENTION Breast cancer screening coverage Cervical cancer screening coverage Colo-rectal cancer screening coverage Organised screening process indicators SCREENING Interval between diagnosis Interval between diagnosis and first treatment and first treatment Patients treated by surgery / chemotherapy / radiotherapy chemotherapy / radiotherapy Radiation equipment % of centres with at least 2 radiation equipments 2 radiation equipments CAT equipment Compliance with guidelines Palliative care teams TREATMENT AND CLINICAL ASP. Coverage of cancer registration Stage at diagnosis Person-years life lost due to cancer Completeness of the registration EPIDEMIOLOGY AND CANCER REG. Total National Expenditure on Health for cancer on Health for cancer Total Public Expenditure on Health for cancer on Health for cancer MACRO SOCIAL- ECONOMIC VARIABLES

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

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

19. Www.istitutotumori.mi.it/project/eurochip/homepage.htm INDICATORS AT HIGH PRIORITY (3) MACRO 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 * Total National Expenditure on Health for cancer 34)Total National Expenditure on Health for cancer 35)Total Public Expenditure on Health * 36)Total Public Expenditure on Health for cancer 37)Expenditure on primary cancer prevention 37)% elderly in 2010-2020-2030 * 38)Age distribution of population * * Connected with other HMP projects

20. PRIORITYLEVELS Dr. Juliette Bloch

21. PRIORITY LEVELS A A Direct indicator – Important – With or without any problem B B 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

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 * National Expenditure on Health for cancer 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 INDICATOR 1: Education level 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 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 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 StandardizationCONCLUSION 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

51. Priority areas of the public health programme General health policy Health determinants Health threats Health information By Dr. Tapani Piha

52. Health information Bringing programmes together Cancer Injury Health monitoring Pollution Aids Rare diseases -2002 2003- By Dr. Tapani Piha

53. Health information Bringing programmes together Cancer Injury Health monitoring Pollution Aids Rare diseases -2002 2003- By Dr. Tapani Piha

54. Public health programme Implementation 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 By Dr. Tapani Piha

55. Stages in data processing Stage 1 Data definition and quality development Stage 2 Support to data collection at national level Stage 3 Data collection, processing and storage at EU level Stage 4 Analysis, advice, reporting, informing and consulting Stage 5 Mechanisms for exchanging, promoting and disseminating results By Dr. Tapani Piha

56. DECISIONS OF THE MEETING

57. TOTAL 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

58. EXPENDITURE FOR CANCER PREVENTION Public Expenditure against tobacco: this indicator is a good proxy for the public actions for cancer prevention

59. EXPENDITURE FOR CANCER SCREENING Public Expenditure for organized screening programmes: It is quite easy to collect. This could be an extra information over the other screening indicators

60. EXPENDITURE 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

61. EXPENDITURE FOR CANCER REGISTRATION expenditure on population-based cancer registration

62. EXPENDITURE FOR CANCER RESEARCH 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

63. EXPENDITURE OF PRIVATE/NON PROFIT INSTITUTIONS Expenditure subdivided by prevention (including screening), research and treatment (for example surgical facilities), registration