Too often, patients are seen as ‘study objects’ and research projects are about them instead of with them. However, in aiming for projects that make a significant difference and have societal impact, it is essential to work together with those with lived experience in the area under study. The Involvement Matrix can help with involving experts by experience in research projects.
Working together with experts by experience
Experts by experience, or people with lived experiences, are people whose own experiences have equipped them to become experts in a certain area. One could think about patients, but also young people with a chronic condition, their family members or elderly. Involving these experts in research project brings many advantages. It results in new insights that project leaders might not have, while it empowers the experts by experiences. Moreover, it leads to hands-on results that can directly benefit the people focussed upon in the project.
The Involvement Matrix
But how can experts by experience be involved in research projects? The simple answer: talk about it! In collaboration with a group of experts by experience, we have created a tool to start this dialogue: the Involvement Matrix. This is a tool for project leaders and experts by experience to engage in regular dialogue about their ideas, needs and expectations. The Involvement Matrix allows those involved to make clear agreements about the nature of involvement of experts by experiences in a project.
The Involvement Matrix can support project leaders to:
1. Give the collaboration with experts by experience a central place in the research;
2. Improve (the organisation of) collaboration with experts by experience;
3. Report on collaboration in a systematic and clear manner
Start working with the Involvement Matrix!
To promote and facilitate the involvement of experts by experience with the help of the Involvement Matrix, several tools have been developed to provide guidance in how to start working with the Matrix.
• A Practical Guide on how to use the Involvement Matrix
• A Word-version of the Involvement Matrix that can be filled on the computer
• A checklist for project leaders/researchers for using the matrix
• A factsheet on the Involvement Matrix
• An overview with examples on how to fill in the Involvement Matrix
These tools and the Involvement Matrix itself can be found on the right side of this webpage.
Dr. Marjolijn Ketelaar, senior researcher
firstname.lastname@example.org or email@example.com
Smits DW, Van Meeteren K, Klem M, Alsem MW, Ketelaar M. Designing a Tool to Support Patient and Public Involvement in Research Projects: The Involvement Matrix. Research Involvement and Engagement 2020; 6: 30. doi: 10.1186/s40900-020-00188-4.
Ketelaar M, Smits DW, van Meeteren K, Klem M, Alsem MW. Involvement of young people and families in all stages of research: What, why and how? In: Imms C and Green D (Eds), Participation: Optimising Outcomes in Childhood-Onset Neurodisability. London: MacKeith Press, 2020, p 105-117. ISBN: 9781911612162