The EUCAPA Project: A Concept for Patient Engagement and Capacity Building for the New Health Technology Assessment Regulation

Speaker(s)

Muehler M1, Siebert S2, Schnell-Inderst P2, Rossmann S2, Puntscher S2, Planinschitz T2, Hallsson LR2, Houyez F3, Delaye J3, Strammiello V4, Huic M5, Siebert U6
1UMIT TIROL - University for Health Sciences and Technology, Institute of Public Health, Medical Decision Making and Health Technology Assessment, Hall i. Tirol, Austria, 2UMIT TIROL - University for Health Sciences and Technology, Institute of Public Health, Medical Decision Making and Health Technology Assessment, Hall i.T., Austria, 3EURORDIS - Rare Disease Europe, Paris, France, 4European Patients’ Forum, Brussels, Belgium, 5HTA/EBM Center, Zagreb, Croatia, 6UMIT TIROL - University for Health Sciences and Technology, Hall in Tirol, Austria and Harvard Chan School of Public Health Harvard University, Hall in Tirol, 7, Austria

Presentation Documents

OBJECTIVES: The new European Health Technology Assessment Regulation (HTAR) requires involving patients in the decision-making process in health technology assessment (HTA). This project aimed to develop a HTA training curriculum and capacity building program enabling patients and patient representatives to participate meaningfully in HTAR activities and providing them with needed skills for effective participation.

METHODS: We applied a co-production approach to develop a free, three-stage, progressive curriculum and training program that also incorporates insights from patient representatives. The development included a literature review on existing HTA curricula and trainings to pre-select the eligible contents, which were refined through a Delphi survey of the project consortium (i.e., European Organisation for Rare Diseases, European Patient Forum, UMIT TIROL) and the EUCAPA Advisory Board. Feedback from participants was obtained after each course via online survey and used for continuous optimization of the course content and format.

RESULTS: A two-hour introductory HTA course is available online as self-study videos, seen by 132 participants. Four virtual eight-hour fast-track trainings were attended by 63 participants, covering HTA processes, health decision sciences as well as participation opportunities in the new HTAR such as Joint Clinical Assessments (JCA) and Joint Scientific Consultations (JSC). Two three-day extended face-to-face trainings were held at UMIT TIROL with 23 participants. Feedback from participants highlights the value of real-life examples, networking and practical exercises.

CONCLUSIONS: The training program developed with our patient engagement curriculum has provided patients and patient representatives with the necessary knowledge and personal skills to actively participate in the new HTAR and ultimately giving them a voice in healthcare decision making. Participants emphasized the need to share best practices and examples of patient involvement in HTA. The project's blended learning formats combined with a planned alumni board will strengthen accessibility and sustainability for continuous learning and meaningful exchange.

Code

PCR301

Topic

Health Technology Assessment, Patient-Centered Research

Topic Subcategory

Instrument Development, Validation, & Translation, Patient Engagement, Stated Preference & Patient Satisfaction, Systems & Structure

Disease

Oncology, Rare & Orphan Diseases