Patient and public involvement in designing, delivering and disseminating core outcome set (COS) studies, what does it look like?

The COMET (Core Outcome Measures in Effectiveness Trials) Initiative aims to realise the full potential of research to improve health. Currently, this potential is not reached because different studies in the same health condition often measure different outcomes in research. This means that data cannot be combined and compared, greatly compromising the potential for research to improve health.

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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