The Role of EUnetHTA 21 in Promoting Patient Engagement

OBJECTIVES: We aimed to evaluate patient engagement in the evolving European health technology assessment (HTA) process through exploring the current level of engagement and its impact, assessing the approaches taken by EUnetHTA to promote engagement, and identifying challenges and future perspectives.

METHODS: A targeted review of patient engagement in the HTA process was conducted via analysis of EUnetHTA deliverables, guidance documents, methodologies, and updates from EUnetHTA and European Commission websites.

RESULTS: Patient engagement in EUnetHTA initiatives is limited, from the perspective of stakeholders. However, EUnetHTA reported that patient input in early dialogue had valuable impact on engagement recommendations. In previous joint actions, EUnetHTA conducted 7 joint scientific consultations (JSCs), with 6 involving patients at the European level, and 2 joint clinical assessments (JCAs) for medical devices. The first published JCA mentioned that patients were consulted early in the scoping process. When establishing their current work plan, EUnetHTA and the European Medicines Agency prioritised development of methodologies for patient engagement in HTA. Deliverable D7.2/3 provides guidance for engaging patient representatives in HTA organisations. The European Regulation on HTA (HTAR) established a stakeholder network with 44 member organisations, including patient associations, and 2 observers. The EU4Patients project offers support by updating training content, designing an e-learning course, developing interactive training sessions for JCA and JSC, and implementing sustainability measures. Challenges remain, including lack of capacity and resources, expertise and training, alignment of organisations, conflict management, shared valuation of patient input, and pharmaceutical industry concerns regarding incorporation of stakeholder feedback.

CONCLUSIONS: Current patient engagement in EUnetHTA initiatives remains limited, despite efforts from EUnetHTA. HTAR presents a unique opportunity to enhance engagement. To strengthen this framework and ensure efficient HTA, potential future measures could include promoting and allocating resources for patient training projects and establishing communication channels between national patient groups across Europe.