EUPATI alumni Joan Jordan, Begonya Nafria, Dominique Hamerlijnck and Victoria Fonsou report from the first PARADIGM meeting
The word PARADIGM has taken on a whole new meaning in the EUPATI community! The acronym stands for “Patients Active in Research and Dialogues for an Improved Generation of Medicines”. The aim of the PARADIGM project is to advance meaningful patient engagement in the life cycle of medicines for better health outcomes. The 1st Open Patient Engagement Forum, co-organised by PFMD, EUPATI and PARADIGM was held in Brussels on 10th April. The forum, held a month after the launch of PARADIGM, was a launchpad to gain early insights and inputs on the project workplan and to start discussions on specific tasks via thematic workshops. Eighty-four delegates attended the forum, among them four EUPATI Fellows: Dominique Hamerlijnck, Begonya Nafria, Victoria Fonsou and Joan Jordan. Here is what each of us experienced and took away from the event.
Dominique: “The spirit of cooperation was very high at the meeting. It was not a day of just listening to presentations. We had four workshops where we discussed the first ideas on how to move forward with the PARADIGM project. I joined the workshop on a PARADIGM questionnaire and the one on how to measure the Return on Investment of cooperation with patients in the generation of medicines. We had very lively debates, exchanged views and came up with ways forward. The level of engagement of all participants was inspiring. If this happens in the first meeting, this will become an impactful project. We however need more patients to become involved!”
Begonya: “As a Patient Engagement in Research Coordinator of Sant Joan de Déu Children’s Hospital, I’m involved in the PARADIGM project on behalf of paediatric patients. Our institution is part of the consortium that is working for a long time to ensure the right involvement along the lifecycle of medicines for children and young people. There is a lot of work to do in this field and the PARADIGM project will represent a European initiative to work together. Working with the different stakeholders in the same direction: we can deliver patient centered design of medicines. If you are interested in knowing more about the PARADIGM project, follow our website and twitter.”
Victoria: “I started the day only knowing that PARADIGM was a 1-month old project. After a long trip, I entered the forum and I was immediately captured by the energy of the people involved. Shiny eyes, sharp minds! Lively debates, exchange of knowledge and suggested solutions were quickly taking form. It was totally worth the investment of time. I joined the workshops on building the story of PARADIGM and of assessing the value of patient engagement. An interesting outcome was that we all were sharing common points from a different point of view. An actual, fruitful, and pleasant dialogue among patients, researchers and industry people was happening. I was there forming the participatory model of medicine- not just listening or “complying”. By the end of the day, I was sure that my optimism had grown. We were co-creating the present of a human-centered medicine. Actually, it is as simple as a sincere dialogue between all stakeholders and patients!”
Joan: “I came to Brussels knowing very little about PARADIGM. I felt an instant spirit of cooperation, positivity, and a willingness to collaborate in the room. We quickly learned what the project stands for and what it plans to achieve. I was particularly impressed by the pledge for better patient engagement, urging people and organisations to make a concrete commitment to the PARADIGM project. Check it out and see what you can do! A big concern voiced throughout the day was about duplication of effort elsewhere so special attention needs to be paid to this. Overall- an inspiring day which left me wanting to roll up my sleeves and help achieve our common goals.”
We hope that we have shared our experience of the PARADIGM energy with you. Patients have been involved at the early stages of the project- when we can make an impact and influence the direction it takes. Check out the website to learn more. The future is bright!