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How to Involve Users in Research

A researcher and a user have shared their insights on how researchers can effectively involve users in research. Together, they have published an article describing how to optimise this collaboration.

By Nana Olejank Hansen, , 6/6/2024

A collaboration between a researcher from the University of Southern Denmark and a user from Odense University Hospital has resulted in an enlightening and significant article on successful user involvement.

Including users' experiences and perspectives in research enhances value for the healthcare system, researchers, and users themselves.

However, some researchers find it difficult to get started: How should they proceed?

-Establishing contact between researcher and user requires fundamental pedagogical relationship-building. A good and trusting relationship demands both time and respect, explains PhD student Anne Wettergren Karlsson, the researcher behind the article. She continues:

-It is also essential to closely examine the supportive frameworks for collaboration. We discuss this in our article. Factors such as time, location, and finances are crucial. While researchers are compensated for their work, users may bear the costs for transportation and invest their own time.

Definition of Researcher and User

Researcher: Refers to the staff who engage users in the research process, including scientific staff, research nurses, and doctors.

User: Refers to patients, relatives, and citizens who participate in the research collaboration.

Need for Enhanced Focus on Collaborative Frameworks

The article draws on observational and interview data from Anne Wettergren Karlsson's field studies at Odense University Hospital, literature on user involvement, and discussions between Anne Wettergren Karlsson and Bjarne Ledet Larsen, a long-term healthcare user and member of the User Council at the Unit for User Perspectives and Community-based Initiatives, University of Southern Denmark.

-It is important for researchers and healthcare staff to assist users in getting involved. This has been one of the strengths in my collaboration with Anne. User-researcher collaborations are essential for the future and are key to creating a better, stronger, and more user-oriented healthcare system, says Bjarne Ledet Larsen.

The work, published on, reveals that while researchers are eager to embrace user involvement, they often find it challenging to determine how to approach it. There is a need for greater focus on the supportive frameworks for user involvement and a better understanding of it from both perspectives to make it a successful and integrated part of the research process.

Three Valuable Tips for Users

Bjarne Ledet Larsen shares three tips for other users who want to participate in research collaborations:

  • Motivation: Identify what drives you. For me, it is working towards giving my son with type 1 diabetes a better life.
  • Collaborate with the Right People: Be generous and contribute more than you receive – this fosters genuine collaboration. Be selective about whom you collaborate with to ensure your time is well spent.
  • Networking: Connect with other users who can provide support and feedback on your ideas.

Be mentally prepared for resistance from the system – not everyone welcomes user perspectives.

Key Conditions for a Successful Collaboration:

  • Contact: Establish contact through various methods, and ensure you meet the user halfway.
  • Relationship: Develop a good and trusting relationship between researcher and user.
  • Language: Use language that is clear and understandable to both parties.
  • Different Preconditions: Recognise that the researcher brings theoretical knowledge, while the user provides experience-based insights.
  • Frameworks: Consider practical aspects such as time, location, and financial arrangements.

Emphasis on User Involvement in Research

Both the Faculty of Health Sciences and the Department of Clinical Research include user involvement as a key component of their research strategies.

Read SUND’s Research Strategy

Research strategy for OUH and the Department of Clinical Research 

Meet the researcher

Anne Wettergren Karlsson is a PhD student at User Perspectives and Community-Based Interventions, Department of Public Health, University of Southern Denmark, and Odense University Hospital.


Meet the User

Bjarne Ledet Larsen is an active healthcare system user. He serves on the User Council at the Unit for User Perspectives and Community-based Initiatives at the University of Southern Denmark. He is also a father to a son with type 1 diabetes and a research collaborator at Odense University Hospital.


Read the article

You can read the article, “What is Needed for Users and Researchers to Collaborate on Health Research,” on 10.62680/FA0824 (in Danish)

Editing was completed: 06.06.2024