From participation to partnership: Patient and Public Involvement in the EUonQoL project
M Engelaar, F Van Schelven, I Van der Heide, C Dantas, C Higgins, T Kalmi, I Minnée-van Braak, L PinnavaiaAbstract
Background
Patient and Public Involvement (PPI) is embedded in the EUonQoL project, meaning that European cancer patients, survivors and family caregivers were involved in the development of the EUonQoL-Kit. The project engages people with lived experience of cancer as ‘co-researchers’ throughout, to enhance relevance, acceptability and impact of the EUonQoL-Kit.
Methods
PPI activities include tailored training for EUonQoL researchers and co-researchers, assignment of co-researchers to specific project tasks and activities, regular evaluation of their roles and continuous support by a dedicated team of researchers. To explicitly map PPI impact, EUonQoL researchers and co-researchers complete a structured PPI impact log three times per year, enabling ongoing capture of context, processes and outcomes of involvement. This is complemented by qualitative in-depth reflections through semi-structured conversations.
Results
The PPI approach yields iterative refinements to the EUonQoL-Kit and the overall project, with co-researchers contributing to toolkit development, interpretation of validation study results and dissemination activities. Time, perseverance and informal contact sustain engagement and trust, contributing to more meaningful involvement and collaboration within the consortium. While the analysis of the impact log results is ongoing, we expect to be able to present tangible findings related to the impact of PPI. For instance, prioritisation of topics to be included in the questionnaires, enriched interpretation of findings by highlighting pertinent themes and increased visibility and outreach of the EUonQoL project.
Conclusions
EUonQoL demonstrates an adaptive, yet structured PPI approach for a pan-European project on cancer and quality of life. The ongoing PPI impact log results will demonstrate concrete PPI impact on the process and outcomes of the EUonQoL project, thereby underlining the importance of PPI in European research on health and wellbeing.