On September 24-25th, the Rare Diseases research team at the Institute of Social and Preventive Medicine (ISPM), led by Myrofora Goutaki, organised a workshop that placed patient voices at the heart of global primary ciliary dyskinesia (PCD) research.
The workshop brought together patient partners from all major PCD patient organisations worldwide and researchers at ISPM with extensive experience in participatory research, including the Living with PCD study (https://pcd.ispm.ch/en/) and other national and international research projects. Together, the group assessed how patient involvement is currently shaping PCD research. Over two days of discussion, participants identified and showcased best practices, while also exploring challenges, gaps, and opportunities for improvement based on their shared experiences and lessons learned through longstanding involvement in research co-creation. The workshop was supported by a Promotion Fund from the University of Bern awarded to Andrea Fernandez Rodriguez and a Scientific Exchanges grant from the Swiss National Science Foundation awarded to Nena Karavasiloglou, Andrea Fernandez Rodriguez, and Myrofora Goutaki.
Part of the workshop focused on knowledge transfer and exchange with other ISPM researchers, as these joint experiences are transferable in many different areas of research. ISPM staff interacted with both patient-partners and the ISPM PCD research team through a moderated panel discussion, exploring successful participatory approaches and how these can inspire and promote collaboration and patient-centred research within the ISPM and across collaborations in Switzerland and abroad.
The main output of the workshop is a roadmap, co-developed by patient-partners and ISPM researchers, highlighting principles for future patient engagement in PCD research as equal research partners. The roadmap, which will be available in the upcoming months on the BEAT-PCD website, will include strategies to increase engagement and study participation, and mechanisms to ensure the feasibility and sustainability of equitable collaborations. Ultimately, the roadmap aims to empower new collaborations across countries and disciplines and to be applicable to research fields beyond PCD.
