Emergency preparedness register for COVID-19 (Beredt C19)
The emergency preparedness register for COVID-19 (Beredt C19) was established to give the Norwegian Institute of Public Health an ongoing overview and knowledge of the prevalence, causal relationships and consequences of the COVID-19 epidemic in Norway.
Beredt C19 was established so that the Norwegian Institute of Public Health (NIPH) can quickly obtain the necessary knowledge about the COVID-19 epidemic, enabling the authorities to assess risk and implement measures to safeguard the health of the entire population. The register was established in close collaboration with the Norwegian Directorate of Health, the Norwegian Intensive Care and Pandemic Registry and other organisations that are responsible for data sources included in the register.
Why is there a preparedness register for COVID-19
The national surveillance systems and health registries established before the epidemic collect information to fulfil each register's purpose. However, in order to get a quick and reliable overview of the situation, there is a need to frequently extract and compile data from the various data sources. This provides the Norwegian Institute of Public Health with a relevant, essential knowledge base to deal with the COVID-19 epidemic.
Purpose of Beredt C19
The purpose of Beredt C19 is to provide a rapid overview and knowledge of how the pandemic and implemented measures affect the population's health, use of healthcare services and health-related behaviour.
The information in the register can be analysed and broken down into sub-groups to understand transmission, and to target the measures to reduce the incidence of disease in the population, while reducing the negative effects of the implemented measures.
Data collected from other registers
Beredt C19 includes information that has already been collected in the healthcare service, national health registries and medical quality registers, as well as other administrative registers with information about the Norwegian population. Initially, the register contained data from the Norwegian Surveillance System for Communicable Diseases (MSIS), the Norwegian Patient Registry (NPR) and the Norwegian Intensive Care Unit and Pandemic Registry (NIPaR).
Gradually, the need for data sources has increased, and information has been obtained from several data sources. For an overview of which sources are included, see further down this page. Obtaining new information from new sources will be decided on an ongoing basis where there is a need for analysis and knowledge. Using data that are already registered avoids duplicate reporting and additional work for healthcare personnel and figures from different sources will be matched as closely as possible.
About preparedness registers
In an emergency situation, it is necessary to collect and systematise information about patients to gain an overview of the extent, causes and development of the disease, which can form the basis for measures to meet the situation. The Norwegian Institute of Public Health can establish such preparedness registers, according to the Health Preparedness Act §2-4.
The information collected shall be used by the Norwegian Institute of Public Health, and as the data controller, they shall determine the purpose of the register. The register is temporary, and the information must be deleted or anonymised when the issue has been clarified and evaluated. NIPH employees with access to data can only access information that is necessary to fulfil the various questions that need to be answered. There are strict access control and strict routines for handling information in the register.
The data subjects' right of access to Beredt C19 is safeguarded by the fact that they can contact the data controller for all the sources included in Beredt C19 in the usual way. See links to data sources below.
Right of access
The right to access one's own personal data in health registries follows from the Health Registry Act § 24 and from GDPR chapter III, art. 15 (with certain exceptions in the Personal Data Act §§ 16 and 17). Personal information in contingency registries must also follow the GDPR and Health Register Act's rules on the right of access, cf. Health Emergency Preparedness Act § 2-4 third paragraph second sentence.
Which data sources am I in, and who has had access to them?
In Beredt C19, you can request access about which data sources contain information about you. Furthermore, it is possible to request insight into which analysis teams have been given access to and have performed analyses with the relevant data sources. Although analysts have had access to the information about the registrant, they do not have access to your personal number (see also description in the previous section). If you want to apply for access, complete this form. Thereafter, the form and a certified copy of valid identification must be sent by post to the NIPH (to "postmottak").
What information is available about me?
In Beredt C19, information is obtained from existing health registries and data sources but, as mentioned above, personal information that can directly identify individuals is not stored. In order to be able to gain insight into what information is available for the individual in each source, the data subject must contact the original source in the usual way. Since Beredt C19 only receives sub-datasets from the original sources, there will be less information about the person registered in Beredt C19 than in the original sources.
How can I contact the original sources?
By logging in to www.helsenorge.no you can request digital access to the Norwegian Patient Registry, the Municipal Patient and User Registry, SYSVAK, the Medical Birth Registry and the Prescription Mediator. For other registers, reference is made to each individual source (see links to current sources below).
Data sources included in Beredt C19
The knowledge needed to protect the lives and health of the population during the pandemic is changing rapidly. Beredt C19 is set up to be able to quickly provide such decision-making knowledge, and therefore several pieces of information are included, and new sources are planned.
In order for the authorities to be able to form a comprehensive overview and knowledge of the prevalence of the COVID-19 pandemic and the possible effects of the measures, it is important to form an opinion about what would have happened in the absence of the epidemic or of one or more measures. Comparisons with similar groups from previous years will therefore be essential. Therefore both daily updated and historical data are collected.
Norwegian Surveillance System for Communicable Diseases (MSIS)
MSIS is a national health registry. Beredt C19 obtains daily information from MSIS about positive COVID-19 cases and information such as age, gender, place of infection and country of birth. Registered individuals have the right to access their own health information and will be able to contact MSIS about this in the usual way.
On the fhi.no website you will find information about MSIS, the purpose of the register and what information is registered, as well as information about the right to access your own health information.
Norwegian Patient Registry (NPR)
Data from hospitals are obtained from the Norwegian Patient Registry (NPR), one of the national health registries. On the Norwegian Directorate of Health's website, you will find information about the purpose of the registry and the information registered. With the help of NPR's infrastructure, information about admissions is collected from all reporting units in the specialist healthcare service from 1 January 2020 onwards. Data are collected and updated daily. From October 2020, historical data are also collected, to begin with from 2017-2019. The registered person has the right to access their own health information by contacting NPR.
Norwegian Intensive Care and Pandemic Registry (NIPaR)
On Helse Bergen's website, you will be able to read about the purpose of the register and find information about what is registered for the intensive care unit and the pandemic unit, respectively, as well as information about the right to access your own health information. Beredt C19 obtains information from two of NIPaR's data collections: the Norwegian intensive care registry's preparedness form for COVID-19 and the Norwegian pandemic registry.
From the former, data will be collected from 10 March 2020 onwards. Data have been collected from the Norwegian Pandemic Register since the register was put into operation on 31 March 2020 and onwards. However, it also includes post-registrations from the start of the outbreak in 2020.
The State Register of Employers and Employees (Aa Register)
National Population Register
Since October 2020, Beredt C19 collects information from the National Population Register. Information collected includes date of birth, gender, basic statistical unit, residential municipality, school district, place of birth (municipality / country), marital status, information about date/place of death and family relationships. The latter will be collected in order to be able to study transmission in families.
Norwegian Registry of Primary Health Care (KPR)
Information is obtained from KPR to get an overview of how the pandemic, implemented measures and eventually vaccination, affect the population's use of healthcare services and their health. This will also provide information about transmission, and eventually vaccination, in nursing homes. KPR contains data from the municipalities about people who have applied for, receive or have received health and care services.
From KPR, daily data from the Directorate of Health’s KUHR database (Control and Payment of Health Reimbursements) will be added to Beredt C19, as well as historical data from both KUHR and the Directorate of Health’s IPSOS-register (Norwegian Information System for the Nursing and Care Sector). In order to study infection and vaccination in nursing homes, work is ongoing to obtain more frequent updates of information in KPR.
MSIS Laboratory Database
In connection with the COVID-19 pandemic, the NIPH established a national laboratory database. Beredt C19 includes information about samples and analysis results for influenza (virus) and COVID-19 (both virus and antibodies). For information about access to NIPH's health registries, read more below:
Norwegian Immunisation Registry SYSVAK
By obtaining information from SYSVAK, the NIPH will be able to gain the necessary knowledge to plan vaccination against COVID-19. Furthermore, it is important to monitor vaccination coverage and study the effect of the vaccine in different groups of the population, as well as possible side effects. From SYSVAK, data are obtained about immunisation against COVID-19, influenza and pneumococci. Both daily and historical data are collected. The NIPH is data controller for SYSVAK. For more information about SYSVAK and access to your own information, read more here:
Medical Birth Registry of Norway
Data are obtained from the Medical Birth Registry (MFR) to study the effects in pregnant women - both of COVID-19 and vaccination, as well as other effects on pregnant women and births resulting from the measures against the pandemic. More information about MFR can be found here:
Cause of Death Registry
Information from the Cause of Death Register (DÅR) is obtained in Beredt C19, both historical and current data. DÅR contains information about causes of death in Norway. With information from DÅR, we will be able to study death after COVID-19 in different groups of the population, and any other consequences of the measures on general mortality in Norway.
Register of adverse events after vaccination reported by a healthcare professional (BIVAK)
BIVAK contains information about suspected vaccine side effects reported by healthcare professionals. Data are obtained from BIVAK in order to be able to monitor side effects after vaccination against COVID-19, information will be obtained from BIVAK. NIPH is data controller for BIVAK, which you can read more about here:
Norwegian Prescription Database (NorPD)/Norwegian Prescribed Drug Registry
Information on prescribed drugs at the individual level is obtained in Beredt C19. Initially this information will be obtained from NorPD, but in the long term this will be obtained from the Norwegian Prescribed Drug Registry. Information is obtained on drug use and Anatomical Therapeutic Chemical (ATC) classification codes, and includes data going back to week 40 of 2018. Information at the individual level is important to increase our understanding of how drug use (both for COVID-19 and other illnesses and conditions) is related to the course of COVID-19, vaccination and side effects, and other changes within and outside of health services as a result of the pandemic and the implemented measures against COVID-19.
The information will, for example, be combined with information from other registers, such as NPR and KPR, to provide more precise information about which diseases registered subjects were treated for before and during a COVID-19 infection, and how drug use can affect the outcome of the disease (severe disease course and death). It is especially important to look at treatment directly preceding COVID-19 infection and/or vaccination, which can contribute to an increased understanding of why some people suffer unexpected disease progression/effects/side effects of COVID-19, vaccines or other drugs. Together with data on health service use, information on psychopharmaceuticals will also be able to provide an overview and knowledge of the effects of the pandemic and the measures against COVID-19 on the population's mental health.
Institutional Register in the Norwegian Labor and Welfare Administration (NAV)
Adverse Events Register
The Adverse Events Register contains reports of suspected side effects of medicines from healthcare professionals, patients and their relatives in Norway. In order to be able to monitor the occurrence of side effects of vaccination reported by patients and relatives, and other side effects of, for example, COVID-19 treatment, Beredt C19 obtains information from the Adverse Events Register. The data were incorporated in Beredt C19 from February 2021. The Norwegian Medicines Agency is the data controller for the register.
- Adverse Events Register (Legemiddelverket)
Statistics Norway (SSB)
COVID-19 disease affects different groups in the population. In order to obtain knowledge about what characterises individuals, households and families with high infection, severe disease course, death and testing (income, employment status, education / living conditions, etc.), information is obtained from Statistics Norway. Furthermore, it is important to obtain knowledge about how the pandemic and the measures against it affect different parts of the population, such as sick leave and social security use, employment / redundancy and unemployment, and what effect such conditions have on testing, transmission, health care use and vaccination.
Data from Statistics Norway were first obtained in February 2021. It is also important to obtain knowledge about whether different groups have vaccines, and whether the vaccines have the desired effect on severe COVID-19 and death in these groups.
Directorate for Civil Protection and Emergency Planning (DSB)
Data collection stopped 09.02.2022. The information is still stored.
In order to assess the effect of the national measures and measures related to border crossing, and to monitor the level of imported COVID-19 cases, we couple data from the entry registrations system with data from MSIS Laboratory Database, in addition to other data in Beredt C19. This allows NIPH to monitor the number of import cases coupled with information about, for example, departure countries and regions, means of transportation, use of exemptions and overall travel volume. The data are used to assess and monitor trends, and to provide information and advice to the authorities about measures related to travel restrictions and regulations. Information about border crossings from DSB's entry registration system has been available to NIPH since March 2021.
Data from the entry registration system are normally deleted after 20 days according to the COVID-19 regulation, but as Beredt C19 is regulated under the Health Preparedness Act §2-4, data can be stored temporarily in Beredt C19 for a longer period than 20 days. This is important to analyse trends over time, and evaluate effect of the measures applied at the border.
Contact tracing data from municipal digital contact tracing systems
The necessity for a comprehensive nationwide perspective on COVID-19 and the ability to delineate the locations of transmission within society prompted the Norwegian Institute of Public Health to acquire data from digital contact tracing systems deployed across select municipalities. While the temporal scope of the gathered data differs between these municipalities, it's important to note that data collection ceased entirely after February 9, 2022.