Bridging science and patient experience in RSV-asthma research
During our recent consortium meeting in Barcelona, we started the scientific programme with a contribution from Chantal Korver, member of ReSViNET’s Patient Advisory Board. Before we discussed data, genetic variants, molecular pathways and next research steps, Chantal shared her personal story.
She took us through the journey that she, her daughter and her family have been on (and continue to navigate) after her daughter experienced a severe RSV infection in early life, and the long-term respiratory problems that followed.
For a moment, the meeting room was quiet. It reminded the group of the urgency of the research that we consider our professional calling. Behind every dataset, model and molecular pathway, there are families living with the consequences of severe RSV infection. This patient perspective forms an important emotional foundation for our science.
Why patient perspectives matter
But patient representation is not only important because it highlights the relevance of our work. Their stories and experience also help us improve the quality, focus points and potential uptake of our research. For example, Chantal shared how care and follow-up were organised during her family’s journey, and what was missing from their perspective.
She explained that it would have been helpful to know earlier that asthma in the family may be relevant when thinking about the risks after severe RSV infection. She also reflected on the need for better check-ups or check-ins after a severe RSV episode, especially when respiratory problems continue after the first hospital admission.
This triggered an important discussion within the consortium. As a fundamental research project, what can CLARITY already contribute to improving this kind of awareness and care?
From insight to action
Two routes of communication emerged from the discussion.
The first route is aimed at healthcare professionals and policy. The combination of CLARITY’s scientific expertise and input from the Patient Advisory Board could help shape a strong message on the possible long-term consequences of severe RSV infection in early life. Several consortium members agreed that, as a European research consortium, CLARITY may play a role in contributing to better-informed long-term care and a more patient-centred approach.
The discussion also showed how much we can learn from each other across countries. Colleagues from Spain explained that parts of the preventive healthcare system are organised differently there, with more structured follow-up for children. This brought up an important question: can and should experiences and good practices from one country help inform awareness or care pathways in another? And how to approach this as a European consortium?
The second route of communication is aimed at parents and families. As we learned from Chantal, patient input keeps us focused on what families need to know, and when. It reminds us that communication should not only happen at the end of a research project, when new results have become available. Parents may already benefit from clear, careful and accessible information about RSV, possible long-term effects, and factors that may increase risk, such as asthma running in the family.
Improving our science communication
This is where patient representatives can also help us improve our science communication. They help us ask better questions. What information is useful for parents? What language is clear and respectful? Which formats are most likely to reach families? What has worked well in previous awareness campaigns, and where can we improve?
During the same consortium meeting, we also organised a science communication workshop with the young CLARITY team, our PhD’s and post-docs. Together with Chantal and colleagues from ReSViNET, the group discussed ideas for communicating CLARITY research in a way that is accessible, relevant and connected to patient needs.
Where we are now
At this stage, CLARITY remains a fundamental research project. As data are now coming in from different sites across Europe, we have fully emerged in the science, to connect these datasets, refine the genetic map, and identify the molecular pathways that may explain long-term lung damage after RSV infection. Results from the CLARITY project are preclinical and not ready for clinical translation, such as testing preventive treatments or changing care pathways directly.
At the same time, we already have an important message. Severe RSV infection in early life can have long-term consequences for some children, and awareness of these risks matters. And this awareness is right now relevant for researchers, healthcare professionals, parents and policymakers.
Patient representation helps us keep that message in view. It helps us understand what is at stake beyond the laboratory. It also helps us prepare for the moment when scientific results do become ready to move closer to practice.
As a next step, CLARITY and ReSViNET will continue to explore how the two communication routes can be developed further. Both through stakeholder engagement activities and through communication initiatives aimed at parents and healthcare professionals. By involving patients and parents throughout the project, CLARITY aims to build research that is not only scientifically strong, but also relevant, understandable and better connected to the people it ultimately aims to help.