EORTC recognises patient involvement as a vital component of our clinical research in cancer aiming to increase people’s survival and quality of life. We have observed that patients and those affected by cancer have gradually become active participants and co-designers in the research process.
Bringing their perspectives to the development and implementation of clinical trials helps us significantly improve the quality of lay language documents and find a balance between academic knowledge and its understanding by patients.
At EORTC, we believe in the concept of meaningful patient involvement. For us it implies the following:
- carrying out cancer research for patients together with patients,
- a shift from tokenism of patient involvement to co-creation and shared decisions,
- establishing long-term partnerships with patients as a step towards a more research-friendly environment, and recognizing the importance of patients’ voice in cancer clinical research.
EORTC Group of Patient Partners
The Group of Patient Partners is one of EORTC initiatives which primarily aims to:
- improve the quality and relevance of the EORTC research and make it truly patient-centred;
- eliminate research proposals that might not be relevant for patients;
- foster partnership between patients and scientists/researchers ensure the language of patient information sheet to be plain and comprehensive for patients, their families, and caregivers.
Patient involvement in the IDMC
Since our goal is to enhance patient involvement across all facets of cancer clinical research conducted by EORTC, our newest initiative is to appoint a patient representative as a member of the Independent Data Monitoring Committee
IDMC is an independent body aiming to evaluate the accumulating data during the course of clinical trials, assure that the risk-benefit ratio is maintained, and make recommendations on modifications or even early termination of the study. Since the duty of this committee is to ensure the safety of patients and scientific integrity of the trials, we believe it would be invaluable to have patient representatives on board.
Patients’ perspectives can help us understand whether:
- scientific value of the trial is sufficient,
- participation in the trial is feasible for patients, and whether the investigated therapy brings important (positive or negative) changes for patients.
Training for patients
In the framework of developing patient involvement and providing relevant knowledge, EORTC offers training opportunities to patient experts in the form of Patient Days organised every two years.
EORTC Patient Days is a two-day training course designed specifically for European patients, caregivers, and patient representatives. It helps participants better understand the whole clinical trials process, build insights into cancer translational and clinical research from the concept development to the reporting of results. Several interactive sessions enable patients to discuss and explore debate selected topics with experts from different fields, including clinical and scientific researchers and experienced patient advocates.
The 5th edition of Patient Days will be held on 25-26 November 2022. Find out more on our website: Patient Days 2022.
Patient participation in EU projects
“Setting International Standards of Patient-Reported Outcomes and Quality of Life Endpoints in Cancer Clinical Trials”: patient organisation such as WECAN is part of the consortium and will contribute to the development of standards for the design, analysis, interpretation, and presentation of PRO data for cancer clinical trials.
“Next Generation Health Technology Assessment”: in collaboration with the European Proton Therapy Network, EORTC is conducting a case study using real-world data to validate the benefit of proton therapy in Head and Neck cancer. We will collaborate with patient organisation Eurordis to assess impacts for patients.