Table 1 The MULTI-ACT patients’ engagement model guiding principles
From: Comment on “Reflections on patient engagement by patient partners: How it can go wrong”
The added values of the MULTI-ACT patients’ engagement model |
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Mission and agenda-driven engagement model to incorporate patients' input and experience in research steps where their contributions can increase the impact of health research initiatives |
Set up an Engagement Coordination Team (ECT), including people living with the disease and their caregivers, that is in charge to ensure the engagement of a community that is representative to meet a given research mission and agenda |
A governance model that integrates heterogeneity in perspectives (meeting equity, diversity, and inclusion) by shifting away from relying on a few expert patients and work towards engaging a broader patients' community through various research methods |
People living with the disease and their caregivers do not need to be scientific experts to participate and contribute. The real value is not their scientific expertise, but their experiential knowledge |
Identify key indicators to be used for assessing the return on engagement and to monitor if patient engagement has reached the expected impact on the initiatives |