CCI Europe advances patient involvement in first EU-level Joint Clinical Assessment
CCI Europe has supported the inclusion of patient expertise in the first-ever EU-level Joint Clinical Assessment (JCA) for a paediatric oncology medicine by helping identify and facilitate the participation of a patient expert. This milestone demonstrates the vital role of patient organisations in ensuring that the experiences and priorities of children, young people and families affected by childhood cancer are considered in European health technology decisions.
The JCA focused on a medicine for children with low-grade glioma, marking a historic milestone for paediatric oncology and the wider childhood cancer community. It demonstrated that European collaboration can help generate high-quality clinical evidence while highlighting the essential role of patients and families in evaluating new health technologies.
As part of this first EU-level JCA, CCI Europe launched the call for patient representatives and identified the patient expert who contributed to the assessment. This contribution highlights the important role patient organisations play in ensuring meaningful patient involvement in European Health Technology Assessment (HTA) processes and in supporting the inclusion of patient perspectives throughout the evaluation of new health technologies.
CCI Europe also co-signed a patient-led joint statement commenting on the JCA report. The statement reinforces the call for meaningful, structured and early patient involvement in the implementation of the EU HTA Regulation. It outlines key recommendations to ensure that patients’ lived experiences are fully integrated into upcoming JCAs and that patient expertise is recognised as an essential part of the assessment process.
For children and adolescents with cancer, access to innovative medicines, medical devices and diagnostic technologies can make a profound difference. Ensuring that the perspectives of young patients, survivors and families are considered throughout the assessment process helps decision-makers better understand the outcomes that matter most to those living with childhood cancer: not only survival, but also quality of life, long-term effects, treatment burden and everyday functioning.
By supporting patient participation in this first EU-level JCA, CCI Europe reiterates its commitment to ensuring that patient involvement in EU HTA is meaningful, transparent and representative. Patient expertise should be integrated from the earliest stages of assessment, with adequate support, accessible information and sufficient time for patients to contribute effectively.
Through this work, CCI Europe continues to advocate for the perspectives of children, young people and families affected by cancer to be reflected in the decisions that shape access to future treatments and healthcare innovations.
Read the full joint statement here.