A co-produced e-toolkit to support patient and public involvement in developing and promoting core outcome sets

Article type
Barrington H1, Harman N1, Turner J2, Smith M3, Williamson P1, Young B1
1University of Liverpool
2Public research partner
3Public Research Partner & Chair of Cochrane’s Consumer Executive
Background: This work links to the international Core Outcome Measures in Effectiveness Trials (COMET) Initiative. Core Outcome Sets (COS) can reduce research waste by promoting consistency in outcome reporting. Over 400 COS have been published; another 300 COS are in development. COS should be relevant to all research stakeholders, including patients, carers and the public. Patient and Public Involvement (PPI) in COS research helps to ensure that COS studies are accessible and acceptable to all stakeholders, yet PPI in COS studies is not undertaken consistently, is often of limited scope, and its impact is rarely documented. This may partly reflect a lack of tools and training for COS teams. We aim to address this gap in resources using a COS specific PPI toolkit that will help COS developers to consider the range of ways that PPI could be integrated in their study and provide practical support on how to achieve this.

Objectives: To produce a practical resource supporting PPI throughout COS development and dissemination

Methods: The toolkit has been co-created with patient research partners. It is designed to follow the timeline of a COS study. At each stage, COS developers are provided with questions to consider with their public research partners. Specifically, designed PPI resources, including co-produced animations and guidance, are provided at key COS development stages. We also provide links to relevant resources produced by other international organisations. The toolkit includes a template for documenting PPI activity and impacts throughout the study.

Results: The PPI toolkit will soon be available on the COMET website. It will be promoted in the COMET Initiative newsletter and through social media.

Conclusions: The co-produced COMET PPI toolkit is an evolving resource for COS developers. Further resources for the toolkit will also be co-designed with patients. Feedback from toolkit users will be used to refine the content.

Patient, public and/or healthcare consumer involvement: The toolkit was co-designed by a team including two patient research partners with COS experience. Many resources in the toolkit were also co-designed with patient research partners, including an animation about PPI in COS development, which will be showcased along with the toolkit.