Norwegian translation of EULAR's recommendations for involving user contributors in research within rheumatology.
This is the Norwegian popular science version of EULAR's recommendations for involving user contributors in research within rheumatology.
The original version can be downloaded from the EULAR website: www.eular.org and by following this link:
Here you can see the recommendations in PDF version: Norwegian version EULAR recommendations.pdf
Norwegian translation of the EULAR recommendations for the involvement of patient research partners in rheumatology research
Introduction
EULAR – the European Alliance of Associations for Rheumatology – provides advice to doctors, nurses and patients on how best to treat and manage diseases. In 2023, EULAR updated its recommendations on the involvement of user stakeholders in rheumatic disease research. Researchers, patients and healthcare professionals worked together to develop the new advice.
What do we already know?
There are clear benefits to involving user stakeholders in research. This has been recognised by organisations such as the World Health Organisation and the European Medicines Agency. Although patients participate in studies, they have traditionally not been involved in designing them, or had any influence on what the results might mean for those concerned.
User contributors have a different role than study participants. User contributors are people who have the disease being studied and are invited to work as active members of the project team. User contributors contribute their experience and knowledge of the disease to the ongoing research.
EULAR published its first recommendations on user involvement in research in 2011. Since then, the role of user involvement has evolved. New evidence has emerged on how best to involve user involvement and its value for research outcomes. Today, there are also networks of user involvement professionals who can provide training and support. EULAR felt it was important to include these new aspects in the updated recommendations.
What do the recommendations say?
In total, there are 5 overarching principles and 10 recommendations.
The principles state that user contributors provide input through active collaboration as equal partners with researchers, based on their personal experience with and expertise in the disease being studied. Relatives can also provide input on patients' experiences.
Individuals who take on the role of user collaborators add value and relevance to all types of research, benefiting both patients and researchers. Ultimately, open communication, trust, respect, and a willingness to learn are needed to achieve equal and successful collaboration.
Each recommendation is based on the best current knowledge from studies with scientific evidence or on expert opinions. The more stars a recommendation has, the stronger the evidence.
* One star (*) means that it is a recommendation with limited scientific evidence.
** Two stars (**) means that it is a recommendation with some scientific evidence.
*** Three stars (***) means that it is a recommendation with quite a lot of scientific evidence. **** Four stars (****) means that it is a recommendation supported by a lot of scientific evidence.
Recommendations
• User contributors should be involved in all types of research, including basic research, translational research, and clinical research. **
The original recommendations focused on user participation in clinical research, but it is also important to include user participation in other types of research. Basic research is what drives medical discoveries, where one tries to uncover key information about certain aspects of a disease. Translational research aims to use this knowledge to solve clinical problems – perhaps by developing a new drug. The experiences of user participation can be relevant in these early stages of research and in clinical trials of new treatments.
• Researchers should involve user collaborators at the start of a research project and throughout all stages. ***
If you are a user contributor, you may be involved in all stages of a project – from developing the initial research questions and study design, to data collection, interpretation and dissemination. This can be time-consuming, and the research team should explain all of this in advance.
• At least two user contributors should be involved in each project. *
The ideal number of user contributors in a project will depend on the specific research context, but there is evidence to support having more than one person involved.
• Recruitment of user contributors should be based on a clear and agreed description of roles and responsibilities and should aim for diversity and inclusion. **
The user collaborator role should include a description of the activities and responsibilities required, and a corresponding overview of the areas the project team will handle. This information should be made available during the recruitment phase. During the recruitment phase, it is important to have realistic criteria for the user collaborator role.
• The project team should create a supportive environment and facilitate the user collaborators' contributions. *
Everyone in the project team should work to support the user contributors in their roles and facilitate their meaningful contributions to the project. This may mean assessing their personal needs, being aware of their workload, and setting realistic deadlines. The team should also consider writing summaries in a language that is understandable to the user contributors. Another important factor is that much research and reporting is done in English. The project team should therefore take into account user contributors whose native language is not English.
• There should be a defined coordinator who supports the collaboration between researchers and user contributors. ***
The new role of user engagement coordinator has become more common. The coordinator takes responsibility for much of the logistics, information, communication and interaction between the user engagement team and the project team. A coordinator can be either a user engagement team or a researcher – but can also be someone in a patient organization or at an academic institution. A coordinator does not replace the need for the project team to also support the user engagement team.
• Researchers should have access to training and support to achieve effective communication and collaboration with user contributors as equal partners. *
Feedback is important. The evaluation should look at how satisfied the user participants and researchers are with the collaboration, and whether there are areas for improvement. The usefulness of user participation for the project results should also be assessed
• The contribution of user collaborators must be acknowledged. *
If appropriate, this could include including user contributors as co-authors of published articles or reports. Consideration should also be given to offering financial compensation for the work that user contributors do.
Summary
Overall, these recommendations provide guidance to researchers and user stakeholders. The recommendations should help strengthen future collaborations and contribute to good working conditions. The most important benefit will be health research that meets the needs of patients and is more likely to result in better long-term outcomes.
Recommendations with only one or two stars are mainly based on expert opinions and are not supported by studies, but these can be just as important as recommendations with three or four stars.
If you are interested in becoming a user contributor, you can find more information on the EULAR website or by contacting
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Please watch the webinar about EULAR's updated recommendations for user participation in research!
Read more about user participation in research in The Lancet Global!
