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PraksisNett

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.

engelsk_signerte_legepraksisar_antall_pasientar_og_antall_legeheimlar_per_1._september_2020.png
The illustration shows the development in the number of GP practices that are included in PraksisNett. The goal is to have a total of 90 signed practices at the end of 2020. The illustration also shows the number of patients and General Practitioners (GPs) in PraksisNett as of September 1, 2020.
Photo:
PraksisNett

Each year about 70% of the Norwegian population visit 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. PraksisNett is established to meet this challenge.

→ Researcher: Are you interested in doing research on patients in primary care? Click here!

Contact form (in Norwegian)

Users of The Norwegian Primary Care Research Network
All researchers who are interested in recruiting patients in primary care to research projects may use The Norwegian Primary Care Research Network. If you are a non-Norwegian speaking researcher, we encourage you to look for Norwegian researchers in the field, who may act as your liaison in the project. Your Norwegian counterpart may register interest in using PraksisNett for your common research project through this form. You can also look at our procedure for user projects (in Norwegian).

The researcher must have financing in place before the study can start, but completing the contact form can be done early in the process. Before the study starts, all permissions (Regional Committees for Medical and Health Research Ethics (REC) approval, Data Protection Impact Assessment) must also be in place. Depending on the type of research project, PraksisNett will be helpful in planning and executing the study.

Please contact the Coordinating Node, if you have any questions about the use of PraksisNett in your research.

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.
- Clinical study: 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.

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 praksisnett@uib.no.

Examples of dataset extraction when planning a study:

Extraction 1: How many of the patients in the network use medication x (based on 12 months’ data extraction)
Extraction 2: How many of the patients in the network have disease x (based on 6 months’ data extraction)

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.

→ Are you a GP: Click here!

Click here to send us a request for your GP office to join PraksisNett (form in Norwegian).
Why should GP offices join PraksisNett? Here are some good reasons (in Norwegian):

Viser hva PraksisNett står for
Photo:
PraksisNett

→ Patient: Are you a patient at a PraksisNett GP office? Click here!

Why have we established PraksisNett – The Norwegian Primary Care Research Network?
Our aim is to make it easier to recruit patients in general practice (GP) to research. The researchers who will use PraksisNett will conduct research on issues that are important to these patients. We need research on patients to improve treatment.

What does it mean that a GP office is part of PraksisNett?
The GP offices that are part of PraksisNett have said yes to invite patients to research. If you, due to your current or past illness, are eligible for a study, your GP will contact you. After receiving information about the study, you can freely decide if you want to participate. You will not be included in clinical studies without your written consent.

Participation in research studies is always voluntary. Whether you choose to participate, or not, does not affect the further treatment you receive from your GP.

Can I participate in a research study?
We want all patients to have the opportunity to participate in research studies. When a researcher recruits patients through PraksisNett, your GP assesses whether or not you are eligible for the study. The GP determines this based on the research study's purpose and criteria for joining. Feel free to ask your GP if there are any studies you can participate in.

Why should I participate in a research study?
By participating in a study, you can help us gain more knowledge about your illness and the treatment that works. This will benefit patients with the same illness as you.

What happens to my patient data in PraksisNett?
No sensitive personal data will be obtained without your written consent in connection with a specific study. You can rest assured that no data in PraksisNett will be astrayed.

All the GPs who are part of PraksisNett have a Snow box installed in their office. The Snow box is a small computer that extracts data from the electronic medical record. When the data are transferred to the Snow box, they are transformed so that the data on the box can no longer be associated with your name: The data are pseudonymized, that is, any data that can identify you are replaced with a code.

Where is my data stored?
Your data are stored in the Snow box inside the GP's office. If you have agreed to participate in a study, your data are encrypted before they are sent to a secure analysis server. The University of Oslo, the University of Bergen and NTNU have such secure analysis servers. Data transferred will not identify you or your GP unless the researcher has requested it and you have approved this with a written consent.

Bildet viser logoen til PraksisNett
Photo:
PraksisNett

About PraksisNett

Purpose
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.

Initiators
PraksisNett is a joint national initiative by the primary care research communities at the partner institutions.

Funding source and partner institutions in PraksisNett
PraksisNett is a research infrastructure 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)

PraksisNett is organised as a two-layer interdependent model: A human, resource-based infrastructure of clinical practices; and an advanced, secure IT infrastructure.

The human resource-based network
Once the network is fully established, it will consist of around 90 clinical practices in Norway spread over four regional networks. The PraksisNett 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 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.

Data Management Plan
Data Protection Impact Assessment (DPIA).

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.
- Clinical study: 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.

Publications

Bjorvatn B, Straand J, Halvorsen P, Wensaas K-A, Bellika JG, Fors EA, Gjelstad S, Kristoffersen ES, Øxnevad-Gundersen B, Rørtveit G. «PraksisNett - et nettverk av fastlegepraksiser. En storsatsing på forskning i allmennpraksis». Utposten 2018; nr. 4: 40-43.

Bjorvatn B, Kristoffersen ES, Halvorsen PA, Fors EA, Nilsen S, Rørtveit G: "New infrastructure for research in general practice". Tidsskrift for Den norske legeforening. Published: 14 January 2019. Tidsskr Nor Legeforen 2019. doi: 10.4045/tidsskr.18.0689


Illustration shows GP practices in PraksisNett
Photo:
PraksisNett

Contact us at praksisnett@uib.no

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Producer:
Norges Forskningsråd

 

Nasjonalt praksisbasert forskningsnettverk for primærhelsetjenesten

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TV 2