Quality of Life in Oncology: measuring what matters for cancer patients and survivors in Europe.

This report is written as a product of the project “Quality of Life in Oncology: measuring what matters for cancer patients and survivors in Europe (EUonQoL)”. This project is funded by the European Union.  

Health research is increasingly being conducted with patients and other stakeholders, rather than only for or about them. This collaboration is also termed Patient and Public Involvement, or PPI. To date, achieving successful PPI that lives up to moral, methodological, and educational expectations is a struggle for many, because of its situational and dynamic nature. Therefore, there is a general need for sharing practical examples within the research field that can serve as inspiration on how to organize collaboration with patients and other stakeholders and how to deal with challenges that are encountered. In this report, we will share lessons learned about PPI with patients and other stakeholders from all over Europe within the project “Quality of Life in Oncology: measuring what matters for cancer patients and survivors in Europe (EUonQoL)”. We aim here to provide an insight into the consensus process that preceded the finalization of the EUonQoL-Kit (a new set of questionnaires, specifically designed for the digital self-assessment of quality of life of (former) cancer patients). Specifically, we evaluate the involvement of cancer patients and informal caregivers as co-researchers, and stakeholders as members of the Stakeholder Board, in the decision-making process. 

In conclusion, PPI in the consensus process of the EUonQoL project can be visualized as a steep learning curve. Factors that helped with this development, are a good preparation for all parties, provision of support by researchers specifically responsible for the PPI activities, taking the time and providing the space in the process to develop the collaboration further, and realising the importance of informal contact. Additionally, we can conclude that collaboration between researchers and Stakeholder Board members comes more naturally than with co-researchers. Being used to formal collaboration structures, not experiencing a power imbalance and not being in a vulnerable position are factors that all contribute to this.