National health registries
History
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 registries 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 registries information was published on their purpose and its justification, on the executive authorities of the registry and on their competence, and on the Council of the registry. An amendment to the Act that entered into force in 2004 explicitly declares 13 national health registries and defined the personal and other data that may be processed in the registries without the consent of the subjects of data. The number of registries increased to 14 in 2006 when the National Registry of Assisted Reproduction was established by another amendment to the Act.
The development of national health registries was prevalently due to the initiative of professional medical societies that also determined their specific contents. Each national health registry is in the care of a state institution, the Administrator of the registry that guarantees correspondence of contents, methods and purpose of the registry. 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 registry. Many registries are based on traditions lasting many years, e.g. the Cancer Registry was established already in 1976 and the Registry of Hospitalised Patients in 1960.
Current state
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 registries 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 registries.
In Act no. 372/2011 Sb., some existing registries were abolished, some fused and several new registries were established. The newly established national health registries were National Registry of Injuries, National Registry of Persons Permanently Excluded from Blood Donation and National Registry 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 registries to twelve; the newly established registries were National Diabetological Registry and National Registry of Intensive Care.
Overview of national health registries
- National Cancer Registry
- National Registry of Hospitalised Patients
- National Registry of Reproduction Health
- National Registry of Cardiovascular Surgery and Intervention
- National Registry of Joint Replacement
- National Registry of Occupational Diseases
- National Registry of Therapy of Drug Users
- National Registry of Injuries
- National Registry of Persons Permanently Excluded from Blood Donation
- National Registry of Autopsies and Toxicological Examinations Performed at Forensic Medicine Departments
- National Diabetological Registry
- National Registry of Intensive Care
The extent of information communicated by health care providers to national health registries will be exactly determined in the data standard issued by Ministry of Health and in binding methodological instruction to the National Health Information System.
Basic information on the registries
The purpose of the registries 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 registries 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 registries 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 registries do not contain names, surnames or addresses of the subjects of data (the patients) or any other personal characteristics.
Access to data and their protection
Individual data from the registries are not publicly accessible. Data from the registries 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 registries 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 registries 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 registry 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 registries and they can only see “their entered data”. The number of other authorised persons with access to all data in a certain registry is strictly limited to single individuals. The Administrator of the registry 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 registries, 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 registries are anonymised by means of one-way encryption algorithms.
Information about registries abroad
Many European countries operate large numbers of health registries with personal identification numbers (PIN). This concerns first of all North European countries with long-term tradition and experience in operation of registries 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 registries 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.