Who decides what is worth researching? Fundació Ictus speaks up on Catalan radio

Esther Duarte, director of Fundació Ictus, has taken part in Aquí Barcelona, a radio programme on SER Catalunya, to discuss the importance of incorporating the perspectives of patients and their families from the earliest stages of research.

During the conversation, Duarte highlighted the value of lived experience in identifying needs and defining priorities that reflect everyday life after a stroke.

Her reasoning is simple. For a patient and their family, hospital care is only the beginning of a long road, often full of uncertainty. Questions about regaining independence, adapting to change and finding support do not stop at discharge. According to Duarte, the people living with these consequences are the ones best placed to say which difficulties remain and which solutions could make a real difference in daily life.

Two patient voices in SEISMIC

This approach is also reflected in SEISMIC, where Fundació Ictus helps bring the perspectives of people affected by stroke and their families into the project.

Fundació Ictus is not alone in this role. Cancer Patients Europe, also a partner in the consortium, represents cancer patients, including people living with brain tumours. Together, the two organisations make sure the perspectives of different patient groups are heard throughout the project.

Why it matters

What researchers consider relevant does not always match what people face every day. Understanding medical information, finding adapted resources or getting emotional support can have as much impact on quality of life as a clinical advance. As Juan-Jose Ventura of Cancer Patients Europe puts it, SEISMIC is bringing new alternatives and new hopes.

SEISMIC in the media

Alongside the radio programme, SER Catalunya has published an article that explores this approach to research in greater detail and presents SEISMIC as one of the European projects involving patients and families in research.

This media coverage has raised awareness of the project and helped communicate to a wider audience the value of collaboration between the research community and people affected by stroke.

Read the full article on SER Catalunya (in Catalan): https://cadenaser.com/cataluna/2026/06/24/la-recerca-sobre-lictus-canvia-de-mirada-pacients-i-families-tambe-ajuden-a-decidir-que-es-important-investigar-sercat/

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