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User involvement in Research

Involve users throughout the research process – from idea, to design, to project implementation and dissemination.

Use this guide to increase user involvement in your research project, in order to create high quality research together with the users – people with diabetes or at risk of getting diabetes and their relatives.

Users are experts on their lives with diabetes. In the interaction between users and researchers, valuable knowledge can emerge. From generating new ideas, to successful project implementation and dissemination.

How to go about it 

The figure below shows where you should consider user involvement in your research project:


Tips and tricks for more user involvement and collaboration

  • Users are like most people – completely unique. Therefore, you must consider who you will invite in relation to your research project, purpose and target group.

  • Consider where and how to find relevant users and do it well in advance.

  • Consider when and how the users should participate – please see the figure above. Would you like to have an advisory board following your project, or do you want to invite several users throughout the project.

  • Tell the users about the purpose of their participation and the frame for participation.
    Align expectations from start to finish and create clear roles, e.g. that users provide input based on their own experiences, and that the researchers take care of the academic content and research methods.

  • When users participate in your research - you are the host. You are responsible for the involvement, to be open minded, and to create a good atmosphere.
    You have to listen and be curious about what users are saying, give the users a voice.

  • Make e.g. a calendar invite, be in contact, and send reminders shortly before meetings.

  • Create a win-win situation – make sure that there is also something for the users e.g. a funny experience, increase self-insight, increase competence or the feeling of having made a difference.

  • Avoid professional terminology. Use a language that everyone understands and be as specific as possible, both when speaking and writing.

    Find out if it is possible to pay for participation, provide transport allowance or gift as a thank you.

Need further information?

Contact Program Leader for Diabetes Care and User Involvement at SDCO, Mette Juel Rothmann

This guide has been read through and qualified by users, researchers affiliated with SDCO and SDU and others.