Working Group on Public Health Statistics. LUXCONGRES, 28/29 November 2016

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1 Working Group on Public Health Statistics LUXCONGRES, 28/29 November 2016 Preliminary results of the granted national actions on Inventory on Morbidity statistics in Member States Mika Gissler National Institute for Health and Welfare, FI

2 Eurostat Project: Inventory of Morbidity in Member States 1. Summary Eurostat has asked Member States to undertake national inventories of key morbidity (individual disease) data, based on a shortlist of 67 diagnoses. The purpose of the inventories is to assess the feasibility of defining a set of comparable morbidity indicators to support EU health policy. The expectation is that these indicators are eventually to be mandated in a Commission Regulation in Background EU Regulation 1338/2008 on Community statistics on public health and health and safety at work envisaged the development over a period of time of implementing Commission regulations on several discrete health-related domains. The scope of the 1338/2008 framework includes causes of death, health system activity and expenditure, the health of the population, and occupational health. Morbidity (that is, the incidence and of individual diseases, based on administrative sources) is the final area to be developed. In support of the need to develop this area of statistics, Eurostat quote the Council Conclusions of 10/12/13 on modern, responsive and sustainable health systems. Among the policy areas of the Commission, not only DG SANTE but also DG EaSI and DG ECFIN have emphasised the importance of sufficient health data to sustainable social and economic policies, the Europe 2020 strategy and the process of the European Semester. The most recent Eurostat plans to develop morbidity data follow the in-depth work of a Task Force carried out in , and based in turn on pilot studies conducted in 16 MS between 2005 and The TF recommended the development of indicators covering a shortlist of 67 diagnoses. The long-term timetable for action, proposed by Eurostat at a workshop in Feb 2014, is: Critical inventories of national data sources 2017 Analysis of results of the inventories and recommendations 2018 Agreement by ESSC on way forward for morbidity statistics Pilot data collections Development of Commission regulation 3. Inventory of morbidity project The national inventory of morbidity data sources is intended to inform an assessment of the feasibility of developing a consistent EU set of indicators, to be mandated by a Commission regulation under the 1338/2008 framework. The exercise will not include any actual collection of data, only examination of metadata and methodological information, and discussion with topic experts. The project is a step in a series of preparatory activities expected to lead to a regulation on morbidity (i.e. disease-specific) statistics.

3 The aim of the project is to carry out national inventories of the available data sources on an agreed Shortlist of some 70 diseases, their quality, barriers to availability, and potential to produce harmonised EU statistics. This first stage is only consists of the creation of a factual (though detailed and critical) inventory. Development work or pilot studies, e.g. to test linkage of datasets, data extraction criteria or estimation methods, will follow later in the process. There are 13 countries (AU, BE, CZ, FI, FR, HU, HR, MT, NL, NO, PL, SL and UK) directly involved in the first wave of information collection, with the project running for a period of 12 months from February These were added to by DE and IR who joined the second wave of Member States in January The project is being coordinated by the Office for National Statistics (UK) with the assistance of ISTAT (IT), Hygiene Institute (LT) and the National Institute for Health and Welfare (FI) A full list of diseases and measures covered by the Shortlist can be found at detailed in the attached annex A. 4. Workshops The project has, to date, held 4 workshops. The first workshop was held in Brussels on 26/27 February This was a kick-off workshop for the first round of data collection with all 13 Member States in attendance. The purpose of the workshop was to agree the timetable and methods to be used. The second workshop took place in Luxembourg between 16/17 September The workshop was also attended by representatives from both DG Sante and the BRIDGE Project in order to update the Member States of progress within the area of health. The third workshop was held in Bonn on 3 February This was the kick-off workshop for the second round of data collection and both new Member States were in attendance. As with the first kick-off workshop, the aim of the project was to agree the timetable and methods to be used. The most recent workshop was held in Luxembourg on 17 October All participants of both the first and second round of the projects were invited to attend. The workshop concentrated on communicating the provisional findings of the first round of the data collection.

4 5. Provisional summary of findings Morbidity Shortlist Number Name of disease Corresponding ICD 10 codes Measure Conclusion 1 Tuberculosis A15 A19, B90 1 Tuberculosis A15 A19, B90 2 Sexually transmitted diseases A50 A64 Exclude Modify and rename Sexually transmitted infections 3 Viral hepatitis, including Hepatitis B B15 B19 3 Viral hepatitis, including Hepatitis B B15 B19 4 Human immunodeficiency virus disease (HIV/AIDS) B20 B24, Z21 4 Human immunodeficiency virus disease (HIV/AIDS) B20 B24, Z21 5 All malignant neoplasms (cancer) C00 C43, C44*, C45 C97 5 All malignant neoplasms (cancer) C00 C43, C44*, C45 C97

5 Morbidity Shortlist Number Name of disease Corresponding ICD 10 codes Measure Conclusion 19 Diabetes mellitus E10 E14 19 Diabetes mellitus E10 E14 20 Dementia (incl. Alzheimer's disease) F00 F03, G Mental and behavioural disorders due to use of alcohol (incl. alcohol dependence) Mental and behavioural disorders due to use of psychoactive substances other than alcohol and tobacco (incl. drug dependence) F10 F11 F16, F18, F19 Consider, check EHIS Consider, check ECMDDA 23 Schizophrenia F20 F29 24 Depression and other affective disorders F30 F39 after modification 25 Anxiety disorders F40 F41 Consider 27 Parkinson's disease G20 28 Multiple sclerosis G35

6 Morbidity Shortlist Number Name of disease Corresponding ICD 10 codes Measure Conclusion 29 Epilepsy G40 G41 30 Migraine and other headache syndromes G43 G44 Exclude 32 Glaucoma H40, H42 Discuss further 31 Cataract H25, H26, H28 Discuss further 33 Hearing loss H90, H91 Exclude 34 Hypertensive diseases I10 I13, I15 34 Hypertensive diseases I10 I13, I15 35 Ischaemic heart diseases I20 I25 36 Acute myocardial infarction I21, I22 36 Acute myocardial infarction I21, I22 36 Acute myocardial infarction I21, I22? Or to leave incidence per episode only? Exclude? What difference with incidence per person?

7 Morbidity Shortlist Number Name of disease Corresponding ICD 10 codes Measure Conclusion 37 Heart failure I50 38 Cerebrovascular diseases I60 I69, consider I60 I64 38 Cerebrovascular diseases I60 I69, consider I60 I64 39 Influenza J09 J11 Exclude 40 Pneumonia J12 J18 Consider 41 Asthma J45, J46 41 Asthma J45, J46 42 Chronic lower respiratory diseases other than asthma (incl. COPD) J40 J44, J47 43 Gastric and duodenal ulcer (peptic ulcer) K25 K28 Exclude 44 Alcoholic liver disease K70 Merge with 45? 45 Diseases of liver other than alcoholic K71 K77 Merge with 44?

8 Morbidity Shortlist Number Name of disease Corresponding ICD 10 codes Measure Conclusion 46 Cholelithiasis K80 Exclude 46 Cholelithiasis K80 Justify inclusion? 47 Dermatitis and eczema L20 L30 Develop 48 Psoriasis L40 Develop 49 Rheumatoid arthritis M05, M06 50 Arthrosis M15 M19 Discuss further 51 Systemic connective tissue disorders M30 M36 Exclude 52 Spondylopathies and other dorsopathies (incl. lower back pain) M45 M54 Discuss further 53 Osteoporosis M80 M82 54 Glomerular and renal tubulointerstitial diseases N00 N08, N10 N16 Exclude 55 Renal failure N17 N19 Develop

9 Morbidity Shortlist Number Name of disease Corresponding ICD 10 codes Measure Conclusion 56 Urolithiasis N20 N23 Justify inclusion? 56 Urolithiasis N20 N23 Exclude All morbidity due to injury, poisoning and certain other consequences of external causes All morbidity due to injury, poisoning and certain other consequences of external causes S00 T98 S00 T98 Consider, with possible exclusion of certain blocks To be decided 58 Intracranial injury S06 Consider 58 Intracranial injury S06 Consider 59 Fracture of femur S72 59 Fracture of femur S Poisoning by drugs, medicaments and biological substances and toxic effects of substances chiefly nonmedicinal as to source Poisoning by drugs, medicaments and biological substances and toxic effects of substances chiefly nonmedicinal as to source T36 T65 T36 T65 To be decided To be decided

10 Morbidity Shortlist Number Name of disease Corresponding ICD 10 codes Measure Conclusion A All morbidity due to external causes (injuries, poisonings, etc.) V01 Y89 Exclude A All morbidity due to external causes (injuries, poisonings, etc.) V01 Y90 Exclude B Land transport accidents V01 V89 B Land transport accidents V01 V90 Exclude? C Accidental falls W00 W19 C Accidental falls W00 W20 Exclude? D Accidental poisoning X40 X49 D Accidental poisoning X40 X50 Exclude? E Intentional self harm (incl. suicidal attempt) X60 X84 E Intentional self harm (incl. suicidal attempt) X60 X85 Exclude? F Assault X85 Y09

11 Morbidity Shortlist Number Name of disease Corresponding ICD 10 codes Measure Conclusion F Assault X85 Y10 Exclude? G Complications of medical and surgical care Y40 Y66, Y69 Y84 Develop? G Complications of medical and surgical care Y40 Y66, Y69 Y85 Exclude? 6. General lessons and findings Legislation National regulations are, currently, profoundly different; Current legislation is complicated. EU Regulation(s) could help; Requirement for linkage of data sources therefore there is a specific need for unique identifier and guaranteed access to personal data; There is a complex institutional framework; Current, crucial, data collections (e.g. Cancer,njuries) are not covered by any EU regulation which guarantee both sustainability and quality. On morbidity: a reflection on a potential EU regulation should be started as soon as possible with the intent of facilitating the debates on data accessibility and processing at National level, as well as the feasibility and sustainability of the efforts needed for establishing the new EU data collection. Data Sources There is a lack of primary/out-patient care data which is an essential requirement in most chronic diseases; There is an essential need for reporting and coding of co-morbidities in several sources (i.e. primary, secondary (in & out patient) care, causes of death); Current coverage of data sources is dependent on which types of services are covered and which diagnosis are registered; There is a specific requirement to make wider use of administrative sources; For some specific diseases (e.g. infectious diseases, cancer, injuries) most Member States already have data available for other current EU wide data collections. Therefore, should the requirements be adjusted in-line with the ECDC, JRC-ENCR, IDBdata collection?

12 Within a number of Member States, great efforts are being made to develop new data collections or to better integrate diverse systems; Currently, the ideal of a gold Standard approach based on complete linkage of microdata from multiple sources can only be realised in a minority of cases; The different clinical nature of diseases, particularly the contrasts of acute versus chronic duration and treatment in ambulatory versus hospital settings, mean that it is both necessary and appropriate to take different approaches to measurement. It is not sensible to expect any one size fits all solutions; Some indicators may need modification; The fact countries have their systems organised in different ways has important effects on the limitations of the data sources. Methodology It is noted that there are general problems of separation of incidence and cases; There is a need to further develop the definition of period. Does this mean life-time, partial, one year? The length of episode used in the calculation of incidence is dissimilar for different diseases. It is also almost impossible to define for injuries; There are problems of separation of preliminary (suspicious) and final diagnosis (especially when using health insurance data). There is currently no suggestion as to how this problem can be solved; If data are based on sentinel networks, methods should be developed to ensure nationally representative estimates; Member States often failed to details of operational definitions. This was probably because, at this stage, there was no need to calculate real data in inventory projects. Resources There is a real potential for there to be a lack of both financial and human resources across Member States; Funding of the pilot phase of the data collection needs to be discussed as soon as possible. Wider context Any overlap with current ECHI indicators is likely to create confusion; The role of and topics covered by EU Statistics needs to be clarified; It is recognised that a stronger policy demand justifies greater effort to collect data, and vice versa; Is it better for all Member States to use more complex methods to produce more comparable estimates less regularly than for a minority to deliver incompatible data on an annual basis?

13 7. Neoplasms Data on neoplasms is a priority for the Public Health sector in all EU countries. Neoplasms cause high costs for both health care and the social system and are, in many cases, preventable by modifying risk factors associated to or correlated with lifestyles. Both the diagnose-morbidity statistics pilot studies ( ) and the current EPIMS project on inventories ( ) identified the main sources of information on diagnosed morbidity for neoplasms as cancer registries complemented by hospital data, causes of death data and information from primary care. However, the current registries system coordinated by the ENCR (European Network of Cancer Registries): does not always take into account all the potential sources available at National level; does not assure full coverage at population level, follow different criteria for inclusion and processing of data and, finally, does not have EU mandate for collecting the data therefore potentially impacting on long-term sustainability. The inventories carried out in 13 MS during the EPIMS project has identified that incidence data on neoplasms are currently available in all the 13 participating countries; for all the countries stated that it would be possible to produce estimates, even if these are not currently produced. A substantial information gap has been identified on data for non-residents, which is only available only in few countries. The cancer registers are generally case-based and incidence is calculated accordingly; however eleven out of thirteen countries foresee the possibility to have incidence per person too, providing that clear definitions will be agreed upon. Despite the cancer registries being well established in all the 13 countries, only eight out of thirteen reported the information on coverage and three out of thirteen on completeness 1 for incidence (similar for ). The evaluation of quality for the neoplasms indicators is therefore quite inexact and should be developed further, in collaboration with JRC and ENCR. Different definitions for have been proposed by countries, mainly based on what is currently available at the National level; furthermore estimations are not routinely produced by all the countries participating in the inventory; moreover different statistical authorities or the cancer registries can be responsible for the estimation, providing the National Statistical Office only with aggregated tables. Twelve countries out of thirteen reported the possibility to validate the data. The validation procedure has been intended either as checks for adherence to diagnostic/plausibility criteria or as a comparison with external sources. The IARC tool, and the newly developed JRC tool, have been mentioned by several countries as fundamental tools used at sub-national and National level by cancer registeries for assessing data quality and stability in time series. External sources for cancer 1 Estimated % to which all incident cancers in the population are included

14 data validation mentioned in the inventories were: hospital data, causes of death data or health insurance reimbursement data. Some of these are already recommended and routinely used by countries, while other new sources could be accessed and used for specific ad-hoc studies. This approach would require additional funding, but could open new insights on data quality assessment in the cancer statistics. A good collaboration across the Commission Directorates and JRC is needed to explore/improve this possibility. A prerequisite is the need to have access to and use of personal data to improve several of the quality dimensions within the specifc indicators. Serious concerns have been raised by some countries regarding the actual accessibility of selected variables/sources. In these cases the access and use of data needs to be simplified through changes in the current (National) regulatory or legislative framework, or through ad-hoc agreements for inter-institutional collaboration of all the involved actors on the need of sound methods for cancer monitoring. Among the main issues raised by countries it is worth to mention: 1. Lack of personal identifiers in anatomy and cytopathology reports, which creates a substantial obstacle to completeness of the recording of several cancers (melanomas, pre-invasive lesions of the cervix, prostate, locations whose management comes under the ambulatory), impacting incidence estimates; 2. Lack of individual records with identifiers, including the death certificates, the hospital discharge records, insurances reimbursements, prescriptions and the social benefits databases; 3. Excess of standardization in the structure and content of information is leading to a depletion of sources which may represent a risk of loss of quality of the information collected by registries, jeopardizing the entire production system of cancer monitoring indicators. 4. Newly adopted regulation which has actually worsened the registration and data quality for cancers (reported by one country). Considering that: - The JRC is now leading the ambitious effort of harmonizing the cancer information systems in Europe. The main partner of this exercise is the European Network of Cancer Registries (ENCR); other stakeholders are involved too, such as the International Agency for Research on Cancer (IARC) and the EUROCARE group. The intention is to implement a monitoring system on cancer in Europe, aimed at creating a database for monitoring cancer incidence and mortality in the European Union and providing regular information on the burden of cancer in Europe. These results will be included into a European Cancer Information System (ECIS), being developed over the next few years.

15 - The ECHI indicator 20 deals with cancer incidence of fewer sites compared the Eurostat shortlist; estimates for cancers are not included in the ECHI list. - The huge public health relevance and policy demand for indicators on neoplasms, as evidenced by the countries participating to the diagnose-based morbidity statistics exercises, calls for a coordinated effort on this subject. The WGPH is informed on the current reflection of the Coordination Group on the following aspects related to the indicators on cancer: 1. Sustainability of the cancer registries data collection as well as improvements to data accessibility, use and the possibility of linkage with different sources should be improved. 2. To reflect which is the desired indicator(s) for period. 3. Consider and assess the country s possibility for inclusion of complementary sources, (e.g. hospital and causes of death data), as their routine inclusion would improve the quality of estimates. 4. Recognize that epidemiological monitoring of cancer may differ in scope and methods from the public health focus, and discuss how to organize and manage EU data collections bearing in mind the different mandates and scopes of EU statistics compared to other statistics. 5. Identify a workable approach in order to avoid confusion and potential duplication of work and effort: e.g. in the case of mortality, as EU causes of death statistics include cancers according to international definitions, and EU Regulation on Causes of death 328/2011.

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