Swedish Pharmaceuticals Registry
Health and Performance
|Relevance for this Topic||
Socialstyrelsen Andrejs Leimanis and Helena Schiöler
Swedish National Board of Health and Welfare/Statistics and evaluations
Phone: +46-75-2473291; +46-75-2473996
Fax: +46-75–247 32 52
Email: Andrejs.leimanis(at)socialstyrelsen.se; Helena.schioler(at)socialstyrelsen.se
Timeliness, transparencyUsually one year and two months. Drug prescription data is delivered on a monthly basis. Time for processing aggregated data varies, usually once a year. An annual overviews is published in the beginning of each year. Data is available on a monthly basis.
The information contained in the SNBHW's records are confidential by law. Statistical summaries can also generally disclosed. Registry data, can only disclose for research or statistical purposes, after special assessment of ethical issues and objective of the study.
Data is available for health and social policies and research (downloaded files, DVD/CD. The requested information is released only after the confidentiality agreement / confidentiality clause is regulated by SNBHW. The process is described in detail on NBHW website (in Swedish):
Conditions of access
Formal agreement needed. The agency will charge 960 SEK (excluding VAT) per hour for the hours spent on an order. This applies to both the time judging data security issues and data distribution. Data security concerns cover patients, medical doctors and the pharmacy enterprise.
Around two month (or more in times of temporary overload of applications)
Anonymised microdata; aggregated tables on request. Some aggregated data is available online.
Primarily CSV, SAS, Excel (can also be compatible with SPSS and texts sother on request).
Most information in Swedish – basic information and list of variables can be translated.
The registry contains data on medicines taken prescription or equivalent. The data is used for epidemiological studies, research and production of statistics. The aim is to increase patient safety. The register is a health data used by both researchers, journalists, investigators in the county councils/regions and authorities representatives from the pharmaceutical industry. From 2005/July the personal identification number has been used. Mainly outpatient care from 2005.
Compulsory reports from all pharmacies over the whole country.
Drugs prescribed for individuals at pharmacies. Drugs delivered at hospitals, medical clinic or direct to patients are not included. Almost 90% of the prescriptions are in electronic form, which provides better quality than before.
No geographical restriction
Individuals using drugs prescribed by medical doctors
Swedish Drug Register contains data on pharmaceuticals, supplies, and food taken prescription or equivalent in pharmacy from 1999 onwards. The number of prescriptions are almost 100 million a year. The register is updated with new information every month.
The International Classification of Diseases ICD is a statistical classification with diagnostic codes for grouping diseases and causes of death in order to make the limited statistical summaries and analyzes. The Swedish version is called ICD-10-SE (in inpatient and outpatient registers). Standards from pharmacology is also used. Also ATC for pharmacy products which is used by WHO.
Good opportunities to combine with other Swedish registries on social care and assistance for the elderly, hospital care or other registries.(respecting rules of data protection by anonymised personal identification numbers/ID). Also a number of registries monitored by Statistics Sweden on living conditions, work and income, social insurance etc. In many cases, with the exception of diabetes, it is difficult to link drug use to a medical diagnosis, but the ICD could be more efficiently used in other contexts.
The quality of the data available in the drug register is dependent on a chain of proper management from registration to store in the registry. Pharmacy Service (apoteksservice) and the county councils/regions conduct a continuous quality assurance process with the intent to quantify and minimize registration errors and other errors.
Because of that it is not registered complete administrative information at each outlet, a certain loss of patients occur in the production of statistics broken down into gender, age or registered residence. This is usually due to the social security number on the prescription is not registered correctly. The reason may be that it is not compulsory social security number if the patient does not wish to be included in the benefits with the exception of narcotics. Another reason could be that some people have protected identity.
The registry started in 2005/07 and has been developed over the years. The registry has been adapted to new developments of the ATC-classification system of pharmacy products.
No major changes over the years.
The Swedish prescribed drug register provides patient identity data on an entire country population’s exposure to drugs and will be valuable to study the patterns of drug utilization. The possibilities for record linkage to other health registers gives from an international perspective good opportunities to explore drug and disease associations and the risks, benefits, effectiveness and health economical effects of drug use.
The drug registry and Swedish clinical research could be a strong benefit from an international perspectives. In addition to Sweden, it is mainly Nordic countries, which have the potential to follow an entire population's drug use and its clinical effects. The currently missing part from a Swedish perspective is the underlying cause of the prescription. Information could also be collected from other sources, i.e. underlying morbidity through joint processing with other records, such as patient with diagnoses from inpatient care and specialized care.
Medical progress means that more and more diseases successfully cured and treated. During recent years, new and effective drugs to come in several areas. These improved treatment does not at least a reduced suffering and fewer sick days when such surgery is replaced with drug treatment. Imperfections in terms of knowledge of the drug's effectiveness but also disadvantages side effects. This is related partly related to it in some respects limited trial takes place before a drug approved. Another explanation is that follow-up research has inhibited of that there is no comprehensive information about drug treatments' outcome, whether at the individual or accumulated in the population.
A problem is that the system does not capture the exposure of the drug which occurred in the context of inpatient care. The hope is because the drug register in the long perspective given the opportunity to incorporate both prescribing reason, and that the registry becomes full and in the future also includes medication
Finally picked up drugs is not necessarily synonymous with drug use, since adherence after retrieval of the drug may be flawed. On the other hand, these records should be closer to the real drug than data from prescription data. Besides the advantage that we can now make individual-based analyzes, the strength of this method that with the above limitations in mind, can rapidly obtain a detailed and informative picture of the older drugs in large populations, both nationally and regionally. These data can also be related to national quality indicators which makes it possible to provide a descriptive cross-sectional image of how older people's medication look like in Sweden.
An early study of the drug registry showed that about half of all men and two-thirds of all women in the country purchased drugs during 6 months. The proportion increased by age. About 60% of the elderly used more than five different drugs. The most common drugs for chronic treatment were diuretics among women and antithrombotic agents among men. Substantial gender differences in exposure were observed in some therapeutic areas. Psychotropic drugs, corticosteroids and analgesics were more common among women, while men used antithrombotic agents, antidiabetic drugs, lipid lowering agents and ACE inhibitors to a greater extent.
- The information about this dataset was compiled by the author:
- Kenneth Abrahamsson
- (see Partners)