Measurement on Our Terms: developing a personalised outcome measure through participatory design
Measurement on Our Terms is a collaborative, participatory project which explores co-designing an outcome measure for assessing changes in hand and arm function for people with MS. The project engaged people with MS in a participatory process of outcome measure development of item generation, psychometric testing, and rigorous analysis of validity and reproducibility. Drawing on multiple forms of experiential evidence, the project aimed to establish an outcome measure that captures the lived experiences of individuals with MS in a more personalised and human-centered way.
This participatory approach emphasises the importance of recognising experiential knowledge in healthcare decision-making. By involving people with MS in the design process, the project recognises the epistemics of experience and foregrounds the lived experiences of individuals with MS in shaping health interventions. The project's approach has the potential to inform future practices in MS research and highlights the importance of engaging and working with different forms of experiential knowledge.
This project was funded by the Horne Family Foundation.
Within the workshops, participants discussed the upper limb activities that people with MS find difficult due to their MS, as captured through an online survey. This was aided by an object to represent each activity.
The physical objects became props in the discussions amongst participants
The physical objects became props in the discussions amongst participants as they demonstrated their ability
A list of external factors were generated which affect how people completed these activities. These were categorised for the most impactful.