What can you contribute as a user contributor?

As a user contributor, you use your experiences to see the research from the patient's or relative's perspective through various phases of a research project.

For example, you can:

• discuss what is important to research
• provide input on research questions
• consider information to be given to patients
• say something about what is realistic to ask study participants for
• discuss findings and what they might mean
• contribute to ensuring that results are communicated in an understandable way

You don't need to be a researcher or have any prior knowledge of research – your most important contribution is the expertise you have from your experiences. You will be offered training and guidance on the role of user collaborator in research projects.

Who is the role suitable for?

We need people with different experiences, ages and backgrounds.

The most important thing is that you have experience with the disease or topic being researched, and that you want to use this experience with others.

As a user contributor, you must be able to listen to perspectives other than your own. You should be curious, able to discuss objectively, and be open to the idea that there are multiple solutions to a question.

How does the collaboration take place?

You will be part of a project group, which may include researchers, fellows, clinicians, statisticians and other study personnel.

We want user contributors to come in early and be able to follow the project over time. 

As a rule, at least two user contributors are associated with a project to ensure mutual support and contribute multiple perspectives.

The project manager is responsible for the research. The user collaborators contribute their expertise and experience.

At the beginning, you agree on what you will contribute, how much time it will take, and how you will collaborate. This can be adjusted along the way.

How much time does it take?

Research projects can last several years, but the workload varies.

In some periods there may be more meetings and documents to read. In other periods there is little happening.

You do not have to attend all meetings in the project. You and the project manager agree when your contribution is relevant and it is appropriate for you to participate.

The meetings can be physical or digital. It is important to clarify with the project manager if work, studies, family or health require you to make arrangements.

Do I get paid?

Yes. Agreed work is paid according to the rates of South-East Health.

You may receive a fee for both meetings and agreed preparation. Necessary travel expenses are covered according to current regulations.

The project manager will agree on the scope with you before the work is carried out and provide information about the applicable rates.

Will I receive training?

Yes. REMEDY offers courses in user participation in medical and health research.

Researchers, fellows and user contributors participate in the same course, providing a common basis for collaboration.

It is also possible to receive guidance along the way.

REMEDY patient advice

User contributors in REMEDY are offered the opportunity to participate in the REMEDY patient council.

Here you will meet other user contributors and researchers. The council meets several times a year to share experiences and learn more about research and user participation.

You may also be invited to professional events in REMEDY. You choose which events you want to attend, beyond what you have agreed upon in the research project.

Would you like to contribute?

We need user collaborators of different ages and life situations. Recruitment will be based on a comprehensive assessment of the need for user collaborators.

When we are looking for new user contributors, we invite potential candidates to an interview. This will give you more information about the role, and we will get to know your experience, interests, and how much time you are willing to spend.

The conversation does not obligate you to participate.

Interested or just curious?

Contact us This email address is protected from spambots. You need JavaScript enabled to view it., advisor in user participation in research and leader of the REMEDY patient council.

Read EULAR's recommendations in Norwegian (PDF)

Watch webinar: What is user participation in research?

Watch webinar: EULAR's updated recommendations

Practical cards for researchers and user collaborators

User participation in research, a path to success – explanation of the reference cards (booklet)

The rates for fees for user collaborators in South-Eastern Health