Empowering Patients in Health Technology Assessment: The European Capacity Building for Patients (EUCAPA) Initiative

Background Although the European Union's new Health Technology Assessment Regulation (HTAR) underlines the growing importance of patient perspectives in HTA, patients often face barriers to effective participation due to limited access to engagement opportunities. The objective of this project was to develop, in close interchange with patients, trainings in HTA that equip patients with skills and knowledge enabling them to play an active role in the HTA.

Methods We applied a co-production approach to develop a three-stage training program incorporating insights from patients and patient representatives. This involved literature review for content selection, applying an existing HTA-curriculum, refined via Delphi survey and advisory board discussions. To improve quality, feedback was systematically obtained from patients and patient representatives after each training. The curriculum was tailored to different medical and legislative backgrounds. A blended learning model including online and face-to-face components was chosen to promote accessibility and adaptability. While courses are free, registration was required. Participants were selected by EPF/EURORDIS.

Results Since November 2023, a two-hour introductory course is accessible online with self-study videos, focusing on the new HTAR and gathered 218 people (February 2024). Two virtual eight-hour fast-track trainings, with 34 participants, covered different topics, such as HTA process, study design and patient involvement. A three-day extended face-to-face training included a diverse group of 10 participants from cancer and rare diseases organizations. Their feedback emphasized the value of sharing experiences in HTA to facilitate mutual learning and networking. The balance of theory and practical exercises, including role plays, increased their confidence to actively participate in HTAR. Further eight fast-track and three extended training sessions are planned for 2024/2025.

Conclusion The training program has built capacity to equip patients and patient representatives with skills and knowledge to actively participate in the new HTAR process. Participants highlighted the need to share examples and best practice in HTA to promote active patient involvement. The project's formats, including a planned alumni board, aims to sustainably strengthen patient involvement in HTAR.

Main Statement EUCAPA facilitates accessible training on patient involvement in HTA, promotes ongoing knowledge exchange between participants and lecturers, and foster patient participation in HTA.

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Artikel online veröffentlicht:
05. Dezember 2024