Heather Barrington, Institute of Population Health
The solution is for research communities to agree which outcomes are core for a particular condition. Patient participation is crucial to ensure that these core outcomes are relevant to them.
Consensus-building processes are used to agree core outcome set (COS); however, including patients in COS studies can prove challenging. Involving patients in co-designing and delivering an inclusive COS study may help to ensure the accessibility and acceptability of the study but Patient and Public Involvement (PPI) in COS studies is not consistently undertaken and is often of limited scope. This could be because COS developers are not fully aware of how to involve patients in COS studies or because they struggle to gain patient interest in PPI.
To address this, we coproduced a video animation highlighting examples of Patient and Public Involvement activity in core outcome set development. This resource enables COS developers to publicise and explain PPI opportunities. Additionally, it may encourage COS developers to consider the range of ways that PPI could help in their study.
We are actively promoting this animation internationally. It is a key resource in COMET’s PPI in COS Toolkit.
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