Challenge:

Meaningful patient involvement is a key focus for FAST. To support patient representatives, several modules have been developed, including the recently commissioned learning pathway by PGO support and the EUPATI training. In addition, general supportive tools are available, such as the information database and the Participation Compass (Participatiekompas) by INVOLV.

However, conversations with various patient representatives have revealed a gap in understanding. Patients are often unaware of the existing specialized pathways from development to patient application, the opportunities and benefits they offer, and the associated conditions. Furthermore, there is a need for clarity on when, and in what form, meaningful participation can be incorporated into these pathways.

Education is essential for patient organizations to develop effective strategies, especially with the optimal use of their limited resources. This is especially relevant for representatives of smaller patient organizations that lack access to staff with extensive, long-term expertise. This project aims to address this gap. The needs of patient representatives will be the driving factor, ensuring that this initiative delivers outcomes that complement existing modules and educational materials. The target audience for this project is considered to be at an entry level equivalent to a EUPATI student, or similar, alongside a (volunteer) role within the healthcare/medicines field.

Project Goal(s):

To support meaningful patient participation by facilitating the inclusion of the patient (representative) as a full partner at the table by:

• Providing patient representatives with a clear understanding of the possible pathways and the applicable conditions (using a framework and meetings)

• Clarifying the areas in which patient representatives (where possible, together with healthcare providers) can play a role, how this role can be fulfilled, and what is needed for this.

Project status: Started in 2024

Executing party: Lysiac. For this project, a guidance group has been formed with patient representatives. This group will take the lead in further shaping the project.

Contribution of FAST: FAST is the sponsor of this project, providing substantive guidance and contributing to the organization of meetings.