Institute of Health Information and Statistics of the Czech Republic
Until 2002, individual notifications were filed in the Program of statistical investigations of Ministry of Health, which is a part of the Program of statistical investigations directed by Czech Statistical Office.
In 2002 Ministry of Health of the CR established national health registers on the basis of the mandate granted by Act no. 20/1966 Sb., on health care for the people, in the valid version. For the established registers information was published on their purpose and its justification, on the executive authorities of the register and on their competence, and on the Council of the register. An amendment to the Act that entered into force in 2004 explicitly declares 13 National health registers and defined the personal and other data that may be processed in the registers without the consent of the subjects of data. The number of registers increased to 14 in 2006 when the National register of assisted reproduction was established by another amendment to the Act.
The development of national health registers was prevalently due to the initiative of professional medical societies that also determined their specific contents. Each National health register is in the care of a state institution, the Administrator of the register that guarantees correspondence of contents, methods and purpose of the register. The Council of the registry is a consulting authority, consisting of representatives nominated by the pertinent professional medical society, representatives of MH and employees of the Administrator and, if needed, of an institution performing the processing. The appropriate professional medical society guarantees professional quality of the register. Many registers are based on traditions lasting many years, e.g. the Cancer Register was established already in 1976 and the Register of Hospitalised Patients in 1960.
Since April 1, the new Act no. 372/2011 Sb., on health services and conditions of their provision (act on health services) is in force and replaces the former Act no. 20/1966 Sb.; for national health registers it means codification of the presently existing state and further specification of their operating conditions. In contrast to Act no. 20/1966 Sb.; the new Act listed 10 national health registers.
In Act no. 372/2011 Sb., some existing registers were abolished, some fused and several new registers were established. The newly established national health registers were National Register of Injuries, National Register of Persons Permanently Excluded from Blood Donation and National register of Autopsies and Toxicological Examinations Performed at Forensic Medicine Departments.
As of 1 July 2016, the Act no. 372/2011 Sb. was amended by the Act. no. 147/2016 Sb. The amendment exteded the number of national health registers to twelve; the newly established registers were National Diabetological Register and National Register of Intensive Care.
The extent of information communicated by health care providers to national health registers will be exactly determined in the data standard issued by Ministry of Health and in binding methodological instruction to the National Health Information System.
The purpose of the registers is monitoring of the evolution, causes and consequences of not only serious diseases, including the economic consequences and the impact on the social sphere and on the economy of the social system; further, registering and following up patients, including deceased patients, with selected serious diseases, monitoring of the prevalence, trends, causes and consequences of these diseases and of the follow-up care and also monitoring of patients with injuries; in addition, also statistical and scientific processing of the registered data, focused particularly on the analysis of the health status of the population and of the utilisation and quality of health care, with the aim of improving health of the population.
The importance of heath registers is further enhanced by their role in monitoring contemporary trends in the quality of provided health care in the whole CR in comparison with other countries. Information from the registers is used for the databases of health indicators of Eurostat, World Health Organization (WHO), the Organization for Economic Co-operation and Development (OECD) and for other international comparison.
Data stored in the registers do not contain names, surnames or addresses of the subjects of data (the patients) or any other personal characteristics.
Individual data from the registers are not publicly accessible. Data from the registers are provided to users only in aggregated form (e.g. for territories, kinds of health establishments, groups of diagnoses or individual diagnoses). Anonymised individual data may only be provided for scientific studies and research. Except for cases when data are directly used in provision of health care, identification of subjects of data is not applicable to identification of persons but only to determination whether different reports to the registers pertain to the same person or to different persons. Without identifiers of persons it would not be possible to enter data in controllable manner, remove duplicate notifications, supplement at in time and space, purge for deaths where appropriate, and thus enhance the precision of statistical processing.
Data protection in the registers is on a very high level. Access to individual data is only granted to authorised employees of the Administrator or of the processor of the register and the providers of health care services. Officers of state administration generally do not belong to authorised persons; these officers have only access to aggregated data and by no means to individual personal data. Most authorised persons are health professionals who enter data to the registers and they can only see “their entered data”. The number of other authorised persons with access to all data in a certain register is strictly limited to single individuals. The Administrator of the register grants access rights to authorised users, safeguards the operation of the data collection network, secures information technology (HW, SW. communication), authentication, authorisation and protection of data and also nominates the database administrator, i.e. the authorised employee who has access to the data and is responsible for their processing. Only the database administrator has unambiguous unique access rights to the data and also full responsibility for their protection.
In processing personal data in the registers, their protection and transfer, the Administrator and the processor consequently obey Act no. 101/2000 Sb., on personal data protection, in wording of later regulations. Data protection and security have the same character as in the banding systems. After fixed periods determined by law the data in individual registers are anonymised by means of one-way encryption algorithms.
Many European countries operate large numbers of health registers with personal identification numbers (PIN). This concerns first of all North European countries with long-term tradition and experience in operation of registers similar to those kept in the CR and of many others. Documents existing on the level of EU recommend using PIN as a necessary prerequisite for good functionality and quality of health registers and information systems, naturally, along with adoption of necessary elements of protection of data and privacy of the patients. On the EU level, a much higher harmonisation is required, in order to secure unified interpretation of the directive on personal data protection.