Norwegian translation of EULAR's recommendations for the involvement of user with researchers in research in rheumatology.
This is the Norwegian popular science version of Eular's recommendations for the involvement of user contemplates in research in rheumatology.
The original version can be downloaded from Eular's website: www.eular.org and by following this link:
Here you can see the recommendations in the PDF version: Norwegian Version EULAR RECOOMATIONS.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 to best treat and handle diseases. In 2023, EULAR updated the recommendations on the involvement of user with researchers in research on rheumatic diseases. Researchers, patients and health professionals worked together on the development of the new advice.
What do we already know?
There are clear benefits to involving user with researchers in research. This has been recognized by organizations such as the World Health Organization and European Medicines Agency. Although patients participate in studies, they have traditionally not been involved in designing them, or having any influence on what the results may mean for those concerned.
User contemplants have a different role than study participants. User contemplants are people who have the disease studying and who are invited to work as active members of the project group. User contestants add their experience and knowledge of the disease to the ongoing research.
EULAR published the first recommendations on user participation in research in 2011. Since then, the role of user medicine has evolved. There has been new documentation on what is the best way to involve user medalians and the value of this for research results. Today, there are also networks of user suppliers who can offer 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 overall principles and 10 recommendations.
The principles state that user medalians provide input through active collaboration as equal partners with researchers, based on their personal experience and expertise on the disease being studied. Relatives can also provide input on patients' experiences.
People who assume the role of user medalians add value and relevance to all types of research, which benefits both patients and researchers. Finally, there is a need for open communication, trust, respect and willingness to learn to achieve equal and successful cooperation.
Each recommendation is based on the best current knowledge from studies with scientific documentation or on expert opinions. The more stars a recommendation has, the stronger the documentation.
* A star (*) means that it is a recommendation with limited scientific documentation.
** Two stars (**) mean that there is a recommendation with some scientific documentation.
*** Three Stars (***) means that there is a recommendation with quite a lot of scientific documentation. **** Four stars (****) means that it is a recommendation supported by a lot of scientific documentation.
Recommendations
• User contemplates should be involved in all types of research, including basic research, translational research and clinical research. **
In the original recommendations, the focus was on user participation in clinical research, but it is also important to include user participation other types of research. Basic research is what conducts medical discoveries, where one tests to detect key information on certain aspects of a disease. Translation research aims to use this knowledge to loose clinical problems - maybe by developing a new drug. The experiences of the user co -operation are relevant in these early stages of research and in clinical studies of new treatments.
• Researchers should involve user medalians at the start of a research project and through all stages. ***
If you are a user participant, you may be involved in all stages of a project - from preparing the initial research questions and study design, to data collection, interpretation and dissemination. This can be time -consuming, and the research group exchange explain all this in advance.
• At least two user supplies should be involved in each project. *
The ideal number of user with a project will depend on the specific research context, but there is documentation that supports having more than one person involved.
• Recruitment of user contemplates should be based on a clear and unified description of roles and responsibilities and should aim for diversity and inclusion. **
The user -participant role should include a description of the activities and responsibilities needed, and a corresponding overview of the areas of project group shell handle. This information should be available in the recruitment phase. In recruitment phases it is important to have realistic criteria for user participation role.
• The project group will create a supportive environment and facilitate the contributions of the user participants. *
Everyone in the project group should work to support user employees in their roles, and make preparation for the project. This may mean assessing their personal needs, paying attention to whether they are tired of the workload and preparing realistic deadlines. The group should also consider writing summaries in a language that is understandable to user participants. Another important factor is that a lot of research and reporting is done in English. The project group should therefore take into account user medalians who do not have English as their mother tongue.
• It should be a defined coordinator that supports the collaboration between researchers and user contestants. ***
The new role of user participation coordinator has become more common. The coordinator takes responsibility for much of the logistics, information, communication and interaction between user participants and the project group. A coordinator can either be a user with a researcher - but can also be a person in a patient organization or at an academic institution. A coordinator does not replace the need for the project group to also support user participants.
• Researchers should have access to training and support to achieve effective communication and collaboration with user medalians as equal partners. *
Feedback is important. The Evaluation Exchange look at how satisfied user employees and researchers are with the collaboration, and whether there are areas that can be improved. One should also consider the utility interrupts the pre -project results
• The contribution to user participants must be recognized. *
If applicable, this may involve including user contemplates as co -authors of published articles or reports. It should also be considered to offer financial compensation for the work that user meditians do.
Summary
Overall, these recommendations provide guidance to researchers and user medalians. The recommendations should help strengthen future cooperation and contribute to good working conditions. The main advantage will be health research that meets patients' needs and which is more likely to result in better long -term results.
Recommendations with only one or two stars are mainly based on expert statements and are not supported by studies, but these can be as important as three or four star recommendations.
If you are interested in becoming a user participant, you can find more information on Eular's website or by contacting
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Feel free to see the webinar on Eular's updated user participation recommendations in research!
Read more about user participation in research in The Lancet Global!
