A medicine's performance in controlled research may differ from how it works in the lives of people with varied health needs. Antonio Manfredi, president of Acción Psoriasis, says patients should help define research projects from the beginning, rather than being brought in after key decisions have been made.
In a video interview with Somos Pacientes, Manfredi said people living with a condition bring resilience and first-hand experience. Their daily knowledge of illness differs from scientific expertise, he argued, and can help researchers understand treatment effects and practical difficulties across work and home routines, including self-care. That perspective may also draw attention to adherence problems and effects that shape quality of life.
The question extends to who benefits from new treatments. Manfredi said patient involvement in health technology assessment could help identify inequalities, including disadvantages for women and a lack of innovation for children. A programme for a Canary Islands conference report also addressed law and health research, with digital health among its topics.
Patient-generated data can add context to clinical evidence, particularly when a person has other conditions alongside psoriasis. Manfredi said those circumstances matter when assessing medicine safety, including possible interactions, as well as the burden of treatment. Quality of life also needs attention, he said, because patients experience illness as part of their wider lives.
Access is another concern. Manfredi called on Spain's Ministry of Health to guarantee common minimum standards across the country, saying inequalities exist between autonomous communities and within them. He cited Andalusia, his home region, as an example of significant disparities. He said reducing those gaps requires action by public authorities and healthcare professionals, while patient associations also have a role, and pointed to technology and therapeutic innovation as part of the effort.
