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.

The Norwegian Primary Care Research Network – PraksisNett

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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 contact 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)

What does it cost to use the network?
Each project that uses the network must factor in the following costs in their budget:

Consultation on how the network can be utilized in the best way for that specific project.
Recruitment of general practitioners for the project.
Facilitating the project for the general practitioners.
Follow-up of the general practitioners.
Compensation for the general practitioners for their time contributed to the projects, provided that it is the kind of study where the general practitioners will identify and invite potential candidates to participate in the study. If the study requires inclusion by physical attendance/follow-up/testing at the general practitioner’s office, there will be estimated a cost for the time allocated for this.
Management and modifications of the infrastructure PraksisNett, so that the research project can be conducted in the best way possible.
Regular updates and dialogue with the project management team, if needed.
The end evaluation.

The total cost for the research project will depend on the project’s size and source of funding. The research projects we have supported so far have varied in costs between 40.000NOK and up to more than 1.000.000NOK. Together with the researchers, the regional leader in PraksisNett will estimate the costs for each study and help make a budget.

For studies conducted by commercial entities there are specific rules that apply, where the prosecutor has to cover all costs associated with using PraksisNett.

(Last modified 26.04.2024)

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→ 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 consent in connection with a specific study. In special cases, however, the Regional Committee for Medical and Health Research Ethics (REK) may grant exemption from the requirement for consent (cf. the Health Personnel Act § 29, the Health Register Act § 19 e, and the Public Administration Act § 13 d). There are very strict requirements for such exemptions, and all projects will undergo a careful assessment by REK, a Data Protection Officer and the Management Board of PraksisNett. 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.

How is my personal data processed in research studies?
In studies conducted using PraksisNett, the GP's office and the researcher's institution are joint controllers responsible for processing data on the Snow box at the GP office, cf. Article 26 of the General Data Protection Regulation (GDPR).

In such research projects, the GP processes personal information about you that she/he has already documented in your medical record, to find out if you are eligible for being invited to a study. The purpose of the GP's processing of personal data in this context, is to invite you or other patients to research studies. You can gain access to the information the GP has collected about to see if you match the inclusion criterion in a specific research project, by contacting your GP. The GP will find an overview of this in the GP's IT system. It is only your GP that has access to this information.

If you agree to participate in a research study, the researcher responsible for the study will have access to the data that you give her/him permission to receive. In such cases, your data is transferred encrypted to a secure server to which no one other than authorized researchers have access. The purpose of the researcher's processing of personal data in this context is to use data to investigate one or more research questions in accordance with research protocols that the researcher has had approved by the Regional Committee for Medical and Health Research Ethics (REK). You can access the information the researcher has collected about you by contacting the researcher. The information will correspond with the data you have given your consent to being retrieved. The researcher is obliged to keep a record of this information in the researcher's account on a secure server. The researcher has sole responsibility as a data processor for data transferred from PraksisNett and for data the researcher obtains with the consent of the patient.

Both GPs and researchers are obliged to fulfill your rights in accordance with Chapter 3 of the General Data Protection Regulation (GDPR). Here you can read more about these rights.

Since PraksisNett is a data processor for both the doctors' offices and the researchers, PraksisNett has signed data processor agreements with the doctors' offices that are part of the network and with the institutions of the researchers who may use PraksisNett. PraksisNett has conducted and is annually conducting risk assessments for both the doctor's office and the researcher and has implemented satisfactory security measures. You can read more about data security and privacy in PraksisNett here.

Please contact PraksisNett if you need more information.

(Last modified 26.04.2024)

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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 the Norwegian Minestry of Health and Care Services. The partners in project are:

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
The network consist of around 90 clinical practices in Norway spread over four regional networks. The PraksisNett staff in the regional networks is actively supporting 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 assesses all applications. Research projects are 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.

(Last modified 26.04.2024)

The Norwegian Primary Care Research Network