Five key principles for the success of patient engagement in health research have been outlined by a patient group from one of the biggest EU projects to date.
The new commentary, ‘From tokenism to meaningful engagement: best practices in patient involvement in an EU project’ shares experiences and proposes best-practice solutions based on achievements from the U-BIOPRED (Unbiased BIOmarkers in PREDiction of respiratory disease outcomes) project.
U-BIOPRED is an IMI -funded project that has involved patient representatives at all stages. The dedicated group of people with asthma and parents of children with asthma, known as the U-BIOPRED Patient Input Platform, were instrumental in the project, from conception to dissemination of the outcomes.
The commentary, published in the new open access journal Research, Involvement and Engagement, describes how the patient representatives have been able to develop and drive their input and have their voice heard among over 200 healthcare professional project members.
As the project comes to an end (September 2015), the group 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.
The commentary was authored by the Patient Input Platform, with the support of European Lung Foundation (ELF), who have facilitated patient involvement in U-BIOPRED since 2013.
Find out more about how ELF are involving patients in research and other representation opportunities.
To find out what patient involvement is and why it is important read the ELF factsheet.