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From Tokenism to Meaningful Engagement: Best Practices in Patient Involvement in an EU Project

Overview
Journal Res Involv Engagem
Publisher Biomed Central
Date 2017 Oct 25
PMID 29062494
Citations 47
Authors
David Supple
Amanda Roberts
Val Hudson
Sarah Masefield
Neil Fitch
Malayka Rahmen
Breda Flood
Willem de Boer
Pippa Powell
Scott Wagers
Affiliations
Soon will be listed here.
Abstract

This commentary talks about patient involvement in one of the biggest EU projects to date-U-BIOPRED. It describes how people and carers of people with asthma have been able to develop and drive their input and have their voice heard among the >200 healthcare professional project members. Five key principles for the success of the patient involvement group are presented: involve early, involve deeply, have patients feedback on project progress, include patients in dissemination and help patients convey their own story. This group has been used as an example for other EU-funded projects, and the patient involvement group will be maintained after the end of the project to ensure that their experience and knowledge can help develop best practice in the future.

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