A new commentary from the U-BIOPRED Patient Input Platform (PIP) outlines five key principles for meaningful patient engagement in research projects.
The paper, ‘From tokenism to meaningful engagement: best practices in patient involvement in an EU project’ provides recommendations based on the role and achievements of patient involvement in U-BIOPRED, one of the biggest EU projects to date.
The paper has been published in the new open access journal Research, Involvement and Engagement.
The PIP comprises of patients and parents of children with asthma who have been involved throughout U-BIOPRED including developing criteria, reviewing progress, monitoring conduct in the studies, reviewing documents (study protocols, patient information and informed consent) from the patient’s perspective, and helping communicate results of the project to patients and the public across Europe.
The commentary describes how patient representatives have been able to develop and drive their input and have their voice heard among more than 200 healthcare professional project members.
PIP have outlined five key principles for the success of patient involvement in research projects, which they hope will be used to inform the involvement of patients in future research projects:
- involve early,
- involve deeply,
- have patients feedback on project progress,
- include patients in dissemination,
- help patients convey their own story.
To find out what patient involvement is and why it is important read the ELF factsheet .