The Norwegian Primary Care Research Network
The Norwegian Primary Care Research Network (in Norwegian: PraksisNett) is a research infrastructure that provides a foundation for enhancing the quality of primary care research in Norway. The infrastructure facilitates recruitment of primary care patients to clinical studies and increases the power and predictability of these studies.
Each year about 70% of the Norwegian population go to their general practitioner (GP). Most patients only rarely encounter secondary care; in spite of this, research in primary care is limited. This is due to the lack of a research infrastructure that enables researchers to conduct clinical trials or access patients or patient data within primary care in Norway. The Norwegian Primary Care Research Network (The Norwegian PCRN) is being established to meet this challenge.
The Norwegian PCRN will motivate researchers to conduct clinical studies by facilitating reliable and secure access to GPs, patients and clinical data. It will be organised as a two-layer interdependent model:
A) A human, resource-based infrastructure consisting of a coordinating node and four interlinked regional research networks with associated clinical practices;
B) An advanced, secure IT infrastructure connecting the coordinating node, the regional research networks and the clinical practices, and providing users with individual access for data extraction and processing.
Users of The Norwegian Primary Care Research Network
All researchers who are interested in recruiting GPs, their patients or both to research projects may use The Norwegian Primary Care Research Network. Applicants must apply through the User project web portal.
Research project application
- Apply through the User project web portal.
- For further information, please contact the Coordinating Node at firstname.lastname@example.org
Costs involved in using the network
Costs associated with using the network will be lower while the infrastructure is being established. During the establishment phase, the costs will be related to the amount of work the GPs undertake for each study. GPs will receive compensation according to the time used for each research project. Researchers who want to use the infrastructure must budget for these costs as agreed with the coordinating node.
Planning a study based on data extraction from the network
If you wish to plan a study and extract data, please contact the Coordinating Node at email@example.com.
Examples of dataset extraction when planning a study:
How many of the patients in the network use medication x (based on 12 months’ data extraction)
How many of the patients in the network have disease x (based on 6 months’ data extraction)
Examples of research projects
Simple data extraction study:
How many patients receive treatment x for disease y?
Complex data extraction study:
Laboratory results, use of medication and symptoms described in the medical records for patients with a specific condition.
Patients with diagnosis x are included in a qualitative study (interviews or focus groups).
Randomised Controlled Trials (RCT):
Patients with disease x are included in a randomised controlled trial where treatment y is compared with treatment z. Patients are identified using name lists generated by the data tool, or as a pop-up when the patient is diagnosed during consultation.
The human resource-based network
When the network is fully established, it will consist of 90 clinical practices in Norway spread over four regional networks. The NPCRN staff in the regional networks will actively support the clinics during data collection.
The Coordinating Node is the first point of contact for researchers intending to use the network for their studies. It also acts as the receiving point for research project applications to the network.
The Project Management Board will assess all applications. Research projects will be prioritised based on quality, relevance and feasibility.
The Snow Box
The Snow Health Appliance Box is a solution that enables the initiation and coordination of computing processes in integrated data resources (IDRs) on a large number of IDR datasets stored at the clinical practices. These are, of course, protected by data privacy regulations.
By connecting the Snow Box server to the electronic medical record (EMR) all personal data remain within the practice; aggregated data and statistics are accessed using the distributed data analysis tool through the Snow Coordinator server located in the healthcare network. The aggregated data will be used to describe the population within the network to facilitate planning of research studies.
Data security and privacy
Traditional information-sharing systems usually store data in a central storage location. However, this poses challenges concerning privacy and the right to use the data.
Our basic idea for reuse of information in the healthcare system is that it should be safe to exchange health data, and that systems should be so secure that they are trusted by patients, the authorities and health professionals. To ensure this, the Snow team has developed a system for reuse of data that does not store personally sensitive information outside health institutions. Instead, all information is anonymised before leaving the GP’s office. This method enables NPCRN to protect the patient's privacy as well as the GP’s right to determine how the patient’s data are used.
Informed consent will be obtained from every patient recruited to clinical trials conducted under the auspices of NPCRN.
Bjorvatn B, Kristoffersen ES, Halvorsen PA, Fors EA, Nilsen S, Rørtveit G: "New infrastructure for research in general practice": https://tidsskriftet.no/en/2019/01/kronikk/new-infrastructure-research-g.... Tidsskrift for Den norske legeforening. Published: 14 January 2019. Tidsskr Nor Legeforen 2019. doi: 10.4045/tidsskr.18.0689
The Norwegian Primary Care Research Network is a conjoined, nation-wide initiative. The project is funded by the Norwegian Research Council and its partners:
University of Bergen (UiB)
NORCE - Norwegian Research Centre
- University of Oslo (UiO)
The Arctic University of Norway (UiT)
Norwegian University of Science and Technology (NTNU)
Norwegian Centre for E-health Research (NSE) at the University Hospital of Northern Norway (UNN)