My motivation came from attending my first EULAR conference as a patient; I gravitated towards societies and patient organisations to find more about their outreach work and purpose. I received a very warm welcome and had insightful conversations, some sharing lived experience stories and, others debating healthcare systems and political differences. My work in academia is to support research and engagement so the thought of contributing as a PRP in an international project consortia has been the catalyst to develop personal skills as well engaging in dialogues for integration of patient participation in other areas of healthcare.
My experience has been overall positive; realistically, there are times were we disagree with certain points in the project but that is part of the way of collaborative work; a crucial aspect of keeping patient participation boundaries in check is for the way our project runs the PRP involvement. This is through EULAR coordination via regular communication check ups as well via meetings and workshops. This way, I feel that alongside of my involvement with the designated WPs, our collective voice is managed and taken into account throughout the project.
I hope that STRATA-FIT project will achieve at least the first steps of utilising the proposed IA model to support healthcare practitioners and patients with the management of D2T RA on an international basis;
As a patient, my wish is to be listened and understood with empathy, regardless any healthcare barriers; I would like to see EULAR recommendations to have more weight in the member countries when it comes to the management of the condition.
To work in collaboration, always. The benefits to keep an open mind when it comes the management of RA generates benefits to the patients while building crucial trust relationships with practitioners. This attitude is important as it helps to share lived experiences in a positive manner with the purpose of improving healthcare outcomes.
Try at least once. There are many roles to play as a patient involved in research and dynamics will help to shape levels of participation; I see patient participation as a way to bridge relationships with professionals at all levels, to educate people, to improve health literacy, to reduce health inequalities, to co-create implementation strategies, to collectively strengthen patient voices to shape policy making.
October 2025
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Funded by the European Union (grant agreement no. 101080243). Views and opinions expressed are, however, those of the author(s) only and do not necessarily reflect those of the European Union or the European Health and Digital Executive Agency. Neither the European Union nor the granting authority can be held responsible for them.
The project has also received funding from the Swiss State Secretariat for Education, Research and Innovation (SERI) and from Hungary’s National Research, Development and Innovation (NRDI) Fund.