Expanding partnerships with patients and carers in the EORTC to optimize clinical trials and quality of life measurement

This project intends to (1) formalize patient involvement in the QLG by establishing appropriate structures (i.e. committees, advisory groups) and/or policies. This will cover the QLG at an organisational level and mechanisms for collaboration with the DOGs and with the Patient Panel of the EORTC HQ; Its second objective is (2) to develop specific guidelines for the involvement of patients at the project level in the design and coordination of module development studies and clinical trials with HRQoL as endpoint.

1. We have published a comprehensive scoping review aiming to outline patient involvement in the development and validation of patient-reported outcome measures in oncology.
2. Another review was conducted to gain more insight into the development of a patient involvement framework.
3. A survey was conducted to gather insights of the QLG members and patients about the content of a future patient involvement framework.
4. The survey findings were presented at the ESMO Congress in October 2205.
5. Guidance on patient involvement in the QLG (deliverable 1) has been drafted and is now under review by the project collaborators.
6. Draft of the patient patient involvement framework (deliverable 2) has been prepared.

1. To submit the framework paper to ESMO Open – in April
2. To finalise the guidance and framework and request the QLG EC evaluation/approval – in May

Previous research has shown that most EORTC groups aren’t currently including patients in their group activities. However, there is increased recognition of patient’s valuable knowledge as a crucial source for enhancing research. Understanding the benefits of including patients, as well as for researchers and clinicians, the EORTC recognizes the necessity for a framework and guidelines that can be widely applied across different research groups. This initiative aims to create a sustainable and cohesive framework for patient involvement throughout the EORTC.