Follow the current of the famous Panama canal, and you will come to the ‘Ciudad del Saber’– the City of Knowledge. A hub for entrepreneurs, scientists, NGOs and community leaders; this was a fitting location for the first MS Expert Patient Academy training in October. A unique initiative, the MS Expert Patient Academy offers specialised training to smaller MS organisations facing challenging socio-economic circumstances across Central America. The MSIF funded project uses a ‘train-the-trainer’ framework, equipping delegates with knowledge in health literacy and project delivery to share with their local communities. Participants receive an academic training certification, enabling them to run localised MS Expert Patient Academies back home.
From the 14-16 October, representatives from MS organisations in Costa Rica, the Dominican Republic and Honduras touched down in Panama City to take part. The training was delivered by the Universidad del Paciente y la Familia (UPF), a centre of academic innovation which offers accredited training to equip patients on their health journeys. There was a special focus on self-management, with practical tools to manage wellbeing and navigate life with MS. The aim is to support people with MS with their own health management, improving the quality of life of individuals and activating the MS community.
The training used a partner model, pairing people affected by MS with healthcare professionals from their own country. Each pair completes the training together, sharing learnings, supporting one another, and then uniting to run the same training program for their local MS Communities.
From January 2023 all seven pairs will run a pilot course of the MS Expert Patient Academy in their respective countries. The trainings will be delivered with ongoing support from MSIF and UPF, including written guidance and coaching. Data from these local training programmes will be collected for project reports, which MS organisations can use as evidence for fundraising proposals, advocacy work and organisational engagement.
One participant reflected on their experience at the MS Expert Patient Academy training in Panama, saying:
‘It’s been one of the best learning experiences…I can provide help to others and hopefully I can help them have a big change in their lives… it is great to be able to share and work together for the benefit of patients with MS.’
One particular highlight for participants in Panama was when delegates had the opportunity to visit to the Instituto de Investigaciones Científicas y Servicios de Alta Tecnología de Panamá INDICASAT-AIP (The Institute of Scientific Research and High Technology services of Panama). Representatives visited the research labs of director Dr. Ricardo Lleonart and his team. Dr. Carlos Mario Restrepo Arboleda presented on their research into inflammation, sparking important conversations about the hope that research in Latin America is bringing people with MS. One participant commented.
‘It gave me [a] new perspective to see what they do, generating hope for me as a patient, and a Latina in our scientific role.’
Paulina Arce Casillas, is the project lead and MSIF’s Senior Organisational Development and Movement Building Manager. In this quote, she reflects on why the MS Expert Patient Academy project is important for the region:
‘The MS Expert Patient Academy is a simple yet innovative initiative that can be replicated many times for the benefit of local MS communities. It is an accessible, well-rounded training programme, which meets the needs of people with MS in Central America in low-resource settings. I am very much looking forward to see the results of the first pilot Academies in Costa Rica, the Dominican Republic and Honduras.