EPF’s reaction to the draft Implementing Act on Joint Scientific Consultations on Medicines

The European Patients' Forum (EPF) welcomes the publication of the draft Implementing Act on Joint Scientific Consultations (JSCs) on medicines as a critical step towards securing mandatory, meaningful patient participation in EU health technology assessments.

Key recommendations include:

1. Guidelines for patient participation: Expect timely guidelines for patient involvement in JSCs, developed with patient organisations.
2. Diversity of patient representation: Ensure a broad range of patient perspectives, including national and cross-border expertise.
3. Compensation for participation: Include provisions for fair remuneration of patients in all JSC stages.
4. Onboarding process for patients: Require a comprehensive induction for selected patients, with ongoing support from the HTA Secretariat.
5. Support for digital participation: Implement measures to assist patients with digital participation, including training and user-friendly materials.
6. Accessible and patient-friendly documents: Ensure all materials are clear and patient-friendly, with dedicated staff to support patient experts.
7. Protection of patient data: Maintain patient confidentiality during JSC meetings and inform them about data handling practices.
8. Role of patient organisations: Recognise the critical role of patient organisations in representing collective patient views.
9. Clarify selection criteria for JSCs and increase the capacity for JSCs post-2025.
10. Specify the obligations of Member States regarding the implementation of JSC report implementation.

Read the full feedback to the public consultation here.