Institute of Health Information and Statistics of the Czech Republic

1. Institute of Health Information and Statistics of the Czech Republic Jiri Holub www.uzis.cz

2. Content • Short introduction of IHIS CR • Main task of NHIS • Legislation and Health Registries • Health Registries • Other activities of IHIS CR Study visit KST

3. About IHIS CR • The Institute was established in 1960. It is a government organization founded by Ministry of Health. • The main task of the Institute is management and co-ordination of the National Health Information System (NHIS), including its further development and improvement. • The Institute is divided into sections and departments: • Director and the Director´s Department • Data Collection, Checking & Processing Department (this department has 4 regional units residing in Praha, Brno, Hradec Králové and Ostrava) • Department of Analyses, Publication and External collaboration Study visit KST

4. About IHIS CR • The Institute is a component of State Statistical Service and co-operates with the Czech Statistical Office and other organizations of State Statistical Service. The Institute ensures links between the NHIS and individual health establishments, and co-operates with institutions maintaining information systems of other organizations inside as well as outside the Health Sector. • Data collection from health establishments is steered by the Institute methodically, organizationally and technically. • The Institute co-operates with the associations of health care providers, associations of workers and professional medical associations, health insurance corporations and other organizations, particularly in improving the contents of NHIS and exploitation of the processed data. • The Institute is the official provider of information from NHIS to international organizations in the field of health statistics (WHO,OECD,Eurostat). Study visit KST

5. State statistical service Health administration and policy MINISTRY OF HEALTH CZECH STATISTICAL OFFICE National Institute of Public Health Institute of Health Information and Statistics of the Czech Republic Subordinated organizations/ workplaces responsible for state statistics State Institute for Drug Control Professional health associat. Health education and research inst. Health insurance corporations Health establishments Study visit KST

6. National Health Information System • The functions of NHIS include • methodological support, • collection and processing of information concerning health and health care, activities of health establishments incl. their economics, • management of national health registries, • provision of information in the extent determined by law and other regulations respecting protection of personal data, and exploitation of this information in health research. • The tasks of IHIS CR and of NHIS are defined by Act no. 20/1966 Sb. on care of people ´s health till now. Study visit KST

7. National Health Information System Content - sources • Programme of Statistical Surveys of the Ministry of Health • statistical reports on capacities (beds, staff), activities and economics of health establishments. • National Health Registries • 10 registries • Health interview surveys • Other information systems • Other health registries & inf. systems • Registries & inf. systems in the area of public health protection • Demographic, social and other statistics Study visit KST

8. The Office for Personal Data Protection • The Office for Personal Data Protection is an independent body set up especially to: • supervise observance of the legal obligations laid down for processing of personal data; • provide consultancy in personal data protection. • OPDP develops its activities on the basis of Act No. 101/2000 Coll., on the Protection of Personal Data and on Amendment to Some Acts, as well as by several other laws • The purpose of this act is to protect citizens’ right to privacy, which while guaranteed by the Charter of Fundamental Rights and Freedoms, is coming increasingly under threat in contemporary society due to advancements in information technologies. • The Office do not like health registries in general and especially when they use PIN for identification of individual records. Study visit KST

9. Act 101/2000 Coll. on Personal Data Protection Definition of data processing • "personal data processing" shall mean any operation or set of operations that is systematically executed by a controller or a processor in relation to personal data by automatic or other means. Personal data processing shall mean, in particular, the collection of data, their storage on data carriers, disclosure, modification or alteration, retrieval, use, transfer, dissemination, publishing, preservation, exchange, sorting or combination, blocking and liquidation; Study visit KST

10. Act 101/2000 Coll. on Personal Data Protection • „Controller" shall mean any entity that determines the purpose and means of personal data processing, carries out such processing and is responsible for such processing. The controller may empower or charge a processor to process personal data, unless a special Act provides otherwise; • „Processor" shall mean any entity processing personal data on the basis of a special Act or authorization by a controller; • In the sense of these definitions our Institution is the Controller of health registries and KSRZIS is the Processor of selected health registries. Study visit KST

11. Legislation • Just in this time is everything in movement and it not easy to say what will be in future • New legislation is under preparation • There is huge discussion about number of Registries, about they purposes and about using PIN • For us PIN is crucial point, without a PIN we will cannot fulfill the tasks concerning collaboration among health registries • I hope that wisdom gains the victory and public health will be consider as a one the most important public interest Study visit KST

12. New legislation • The health registry will be defined by new Act about Health Services in a similar way as by still valid Act. • We have put into the draft of new Act about Health Services a paragraph which allows to our colleagues to use the data from other health registries for the purposes of the transplantation registries without any legislative problems in the future. • It means to obtain some data about health status of potential deceased donor – if there are not some associated risks of transplanted organs for recipients due to health problems of donor. Study visit KST

13. National Health Registriesin the Czech Republic • National Cancer Registry • National Registry of Hospitalized Patients • National Registry of Reproductive Health • National Registry of assisted reproduction • National Registry of parturient mothers • National Registry of abortions • National Registry of newborn • National Registry of congenital anomalies • National Registry of cardiovascular surgery and interventions • National Registry of cardiovascular Interventions (catheterizations) • National cardio-surgical registry • National registry of injuriesnew Study visit KST

14. National Health Registriesin the Czech Republic • National Registry of joint prostheses • National Registry of occupational diseases • National Registry of users of medically indicated substitute substances • National Registryof persons objecting to post-mortem extraction of tissues and organs • National Registry of inadvisiable donors of blood new • National Registry of forensic autopsies new • Basic health administrative registries • National Registry of Providers of Health Services • National Registry of health professionals Study visit KST

15. Advisory board of Registry • Each Registry has the Advisory board for director of IHIS CR • The Advisory board consists from representatives of professional medical societies, MoH, KSRZIS and IHIS CR • The Board solve operational problems, deals with development and future of registry and gives its recommendation to the Controller of Registry = IHIS CR • It is advisory and in a manner also steering body of Registry Study visit KST

16. International activities & collaboration of IHIS • WHO • European Health for All Database (HFA-DB) • translation and update of ICD • Eurostat • New Cronos • ESSnet Partnership Health (Care, Cases of Death, MORB, HIS) • DG Sanco • European Community Health Indicators (ECHI) • European Health Expectancy Monitoring Unit (EHEMU) • OECD • Health Data • System of Health Accounts (SHA) • Health Care Quality Indicators (HCQI) Study visit KST

17. Publications of IHIS CR • Czech Health Statistics Yearbook (CR and regions) • Health Care in the Czech Republic in Statistical Data (CR and regions) • „Health statistics“ green series (demography, health status, health workers, health care, economic information) • Ad hoc publications (HIS, international comparisons, women and men health) • Classifications (ICD, ICD-O-3 CV, TNM) • Directories of health establishments) • All our main outcomes are on our web pageswww.uzis.cz Study visit KST

18. Issues for further development • Description of long-term care (linking data from health and social sectors) • Development of presentation system of health indicators (ECHI, regional, …) • Evaluation of health system performance (linking data from health registries and other sources) • Assessment of health status of population • Maintenance and sustainable development of health registries Study visit KST

19. Recommendations on the measurement of Health Care Quality Indicators • Develop legislation that strikes a balance between privacy and data-protectionconcerns on the one hand and the need for reliable and valid information forquality-led governance on the other; • Fully exploit the potential of nationalhealth registries and administrative databasesfor measuring quality of care- particularly through the implementation ofunique patient identifiers; • Implement the comprehensive use of Electronic Health Records formeasuring quality of care as part of population-based statistics Study visit KST

20. Thank you for attention contacts: uzis@uzis.cz holub@uzis.cz