Patients are often just ‘study subjects’. It is often the case that they have no input into the entire process of research, from research idea to, finally, interpretation and implementation of results.
Do you prefer a project that really means something to people and that may have societal impact? Than it is highly advised to involve experience experts in your project.
Experience experts are people whose own experiences have equipped them to become experts in a certain area. These could be people with a handicap or illness or their family or friends, for example. Collaboration with experience experts provides extra insights that you as a project leader often do not have. This leads to results that really benefit the people you are focus on in your project.
However, involvement of patients is not automatically included in projects. So for this reason, in collaboration with a group of experience experts, a tool to promote their input into projects has been developed. This tool is named the Involvement Matrix.
The Involvement Matrix is a tool for project leaders and researchers which enables them to enter into dialogue with patients about the various roles that patients can play at each phase of a project. The Involvement Matrix is also a tool for patients to show what role they wish to play.
Using the Involvement Matrix will support project leaders to:
1. Focus more on collaboration;
2. Improve (organisation of) collaboration;
3. To report on collaboration more systematically
To promote and facilitate patient involvement, we have developed several tools (Involvement Matrix, a practical guide, a digital form to use the Matrix, a checklist, a factsheet and an overview with examples from the PIP project). These tools can be found on the right side of this webpage.
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