How can patients shape their role in Healthcare? This question took center stage on the 16th of November 2024 as the European Patients’ Academy on Therapeutic Innovation (EUPATI) Switzerland hosted its Swiss Patient Forum (SPF) in a parallel session within the First Swiss PPIE symposium.
Representing The Patient Lab, Ghada Ibrahim and Tourane Corbiere were key members of the organising committee with Tourane moderating the PPIE main sessions and Ghada representing EUPATI-SPF at the parallel session entitled : “Patient Preparedness: Shaping Our Roles Across All Levels”.
The discussions underscored the value of patient involvement and the importance of patient education and training in driving meaningful patient partnerships across the healthcare system.
EUPATI Switzerland President, Ivo Schauwecker, and Jennifer Woods, alumna of the Swiss Training Course, opened the day’s program, which was followed by three breakout sessions focusing on key aspects of patient involvement. The sessions were moderated by Ghada Ibrahim, alongside Larisa Aragon and Rosine Mucklow of EUPATI Switzerland. The first explored available training opportunities, awareness, and accessibility of materials. The second addressed the specific support and tools needed for meaningful patient engagement. The third examined how patient representatives can define and shape their roles across all levels.
At the closing of the day’s programme, EUPATI presented a summary of key takeaways, alongside insights from the PPIE symposium.
Three Key Takeaways
Enhancing Training and Acessibility
Greater visibility is needed for EUPATI and other training providers to equip patients with diverse learning opportunities in plain language, multiple formats, and all national languages. Barriers such as cost and travel must be addressed to ensure inclusive patient involvement.
Providing Tailored Support and Tools
Individuals living with a disease should benefit from accessible resources, coaching, and peer support platforms to fulfil their partnership roles. At the national level, further development of courses and tools is essential to support participatory research and policy engagement, particularly for expert and advisory roles.
Defining the Role of Patient Representatives
Patient advocates and experts bring valuable expertise and should be recognized as equal members of working teams. Standards for patient involvement should define roles, responsibilities, fair remuneration, and early inclusion in projects. To strengthen collaboration, joint training for all stakeholders—including researchers, healthcare professionals, regulators, industry, and patients—should be a shared goal. Additionally, networking support, such as a matchmaking platform connecting patients with healthcare stakeholders, is essential for meaningful involvement.
There was broad agreement supporting EUPATI as a key point of contact for best practice recommendations.
The afternoon featured two panel discussions, each tackling critical aspects of patient representation.
Panel 1: Patient Preparedness
What do patients need to take an active role in patient representative discussions and advisory boards? Panelists included Jennifer Woods (EUPATI alumna), Nicole Gusset (SMA Patient Organization), David Haerry (EUPATI-IMI/EMA/SNF), and Larisa Aragon (Board Member, EUPATI Switzerland).
Panel 2: Breaking Barriers
Advancing Patient Inclusion in Advisory Boards and Federal Institutions – What are the challenges to patient inclusion in these settings? Panelists included Serge Houmard (BAG), Suzanne Dreissen (Swissethics), Caroline Matthys (Swissmedic), Chantal Britt (Long Covid Switzerland), Anne Le Coz-Iffeneker (Biogen), and Olivia Straub (Janssen).
Shaping the future in Patient Involvement in Switzerland
As a key partner in organizing the first Swiss PPIE symposium, EUPATI Switzerland was thrilled with the event’s success. The forum reinforced a shared commitment to empowering patients as equal partners in shaping the future of healthcare. By fostering collaboration, improving access to education, and breaking down barriers to involvement, events like these pave the way for a stronger more inclusive healthcare system.
By Ghada Ibrahim
