1. Progress report of the project on inventories of morbidity statistics (EPIMS) Working Group on Public Health Statistics 26-27 November 2015 – Agenda item 8 Myer Glickman, ONS – UK

2. Context of the project Funded by Eurostat on behalf of DG SANTE Part of long-term efforts to improve availability of health information for European Union policymaking and healthcare systems improvement The EU already has consistent statistics on demography, causes of death, healthcare expenditure, health and safety at work, and a cross- Europe health interview survey, based on mandatory definitions and methods EU regulation on healthcare activity is in preparation Previous pilot studies and guidelines on morbidity statistics >10 years

3. What the project is doing National ‘inventories’ describing availability of selected morbidity statistics (disease incidence and prevalence) Potential of existing data sources to produce comparable morbidity statistics Comparing data sources, methods, definitions, quality issues List of 100 indicators for 67 health conditions Indicator definitions based on ICD-10 codes Grant funding: WP1 is the national work of preparing the inventories WP2 is the coordination activities and preparation of a report and recommendations

4. EU morbidity statistics timeline Future plans 2017/18 – Agreement on way forward 2018/19 – Pilot data collections 2019/20 – EU morbidity statistics regulation EPIMS project 2015 – First round of inventories 2016 – Second round of inventories 2017 – Report and recommendations Previous development 2005 – Early pilot studies 2011 – Further pilot studies 2011-13 Morbidity Task Force

5. Activities to date - meetings Kick-off workshop of all participants – Brussels, 26-27 February 2015 Progress workshop of all participants – Luxembourg, 16-17 September 2015 Coordination Group has met 8 times (3 face-to-face, 5 telecon) Telecon of CG with Eurostat and DG SANTE (24 March) to clarify aspects of aims and outcomes Telecon of CG with BRIDGE project (29 Sept) to share information and establish ongoing liaison Presentation to WHO FIC conference, October 2015

6. Activities to date – supporting actions Establishment of collaborative online communication using ‘Trello’ system (http://www.trello.com)http://www.trello.com Establishment of monthly progress reporting cycle and project newsletter Design of standard inventory templates using Word and Excel Compilation of reference material such as cross- classification mappings Production of definitions and guidance for completion of the templates Efforts to clarify key concepts such as ‘episode’

7. Types of data source identified Death registration (relatively uniform process and quality across all EU countries) Hospital activity (mostly limited to in-patient) General practitioner records (primary care) Disease-specific registers (e.g. cancer) Statutory reporting (infectious diseases) Health insurance/reimbursement systems Prescriptions for medicines (not necessarily disease-specific)

8. Range of classifications used ICD-10 (deaths, specialist registers, most hospitals, many insurance databases) ICD-9, ICD-9CM, ICD-10CM, ICD-10AM (some hospitals and insurance databases) ICPC-1, ICPC-2 (many primary care records, insurance databases) SNOMED-CT, Read primary care codes (some primary care records) ATC (prescription records) DSM-4 (specialist mental health services)

9. Range of obstacles expected - 1 Differences in legal bases and confidentiality rules Within-country issues e.g. different regional systems, lack of data from private sector organisations Potential costs to access some data sources Potentially distorting effects of reimbursement systems National and organisational differences in recording of e.g. secondary diagnoses/comorbidities Application of different coding rules and practices in different contexts, e.g. (a)death certification v. healthcare (b)primary v. secondary healthcare

10. Range of obstacles expected - 2 Definition of a new ‘episode’ of disease in different contexts can be problematic Limitations of routine healthcare data sources e.g. typically include in-patients but not out-patients or emergency departments Lack of reliable system-wide personal identifiers Differences in diagnostic preferences of medical practitioners (including linguistic and cultural issues) Also - potential for conflict with other statistics on the same diseases

11. Progress on completion of inventories ICD-10 Chapter Percentage of Individual Diseases (%) Ongoing Templates being drafted Draft being approved Templates Complete Discussions on-going Source identified No source available I. Certain infectious and parasitic diseases010068320 II. Cancers 000501040 IV. Diabetes 01005020 V. Mental and behavioural disorders2102501720 VI. Diseases of the nervous systems101810301023 VII. Diseases of the eye and adnexa10 401020 VIII. Diseases of the ear201020 1020 IX. Diseases of the circulatory system10 44026 X. Diseases of the respiratory system5188331523 XI. Diseases of the digestive system20 1030020 XII. Diseases of the skin and subcutaneous tissue10 402010 XIII. Diseases of the musculoskeletal and connective tissue2010143610 XIV. Diseases of the genitourinary system1710 401310 XIX. Injury, poisoning and certain other consequences of external causes1050451030 XX. External causes of morbidity203750020 Based on completed responses received from Member States as at 16 November '15.

12. General lessons to date Clear agreement on definitions and concepts is vital Participants had to make major efforts to engage national stakeholders - in some cases, this led to improved relationships and access to new data Algorithms have to be developed to overcome technical issues in admin data, e.g. identify episodes Statistical estimates will often be possible, but not necessarily based on linkage of individual records or ‘gold standard’ methods A pervasive issue is ‘quality’ and the CG will link its report to other EU work on this

13. Outlook Completion of inventories from the first wave of participants by end January 2016 Second wave participants in 2016, kick-off meeting probably 3 or 4 February, Bonn CG will begin analysis in early 2016 and aim to substantially draft report by end of the year, then add second wave data Communication with wider stakeholders, e.g. possibly the EUPHA conference in November 2016 Further timetable in discussion between CG and Eurostat