Patient input should begin before psoriasis research is designed

Psoriasis research should include patients from its earliest planning stage, said Antonio Manfredi, president of Acción Psoriasis.

In a video interview with Somos Pacientes, Manfredi set out the central argument: “Patients should help define research projects from the beginning, rather than being brought in after key decisions have been made.” This was a policy discussion, not a treatment trial. The interview reported no clinical endpoint, sample size or effect estimate.

What should patients shape?

Manfredi began with a mismatch between controlled research and daily life. A medicine’s observed performance in controlled studies may differ from its effects in the lives of people with varied health needs.

He sees patient participation as a form of expertise rather than a courtesy. “Their daily knowledge of illness differs from scientific expertise,” he said. People living with a condition bring resilience and first-hand experience. Their accounts can help researchers understand treatment effects and practical difficulties.

By describing self-care, work and home routines, patients can expose practical barriers, adherence problems and treatment effects that shape quality of life every day. The point is not to replace scientific evidence, but to give it context.

Manfredi also argues that research priorities should reflect the people likely to use the treatment. When decisions come after projects take shape, patient input may arrive too late to influence the questions that matter. In plain terms, patients should help choose the research questions before researchers design the study.

Who benefits from new treatments?

He said patient involvement in health technology assessment could help identify inequalities in who benefits from new treatments, including disadvantages for women and a lack of innovation for children. Two gaps carried particular weight in his argument.

Patient input could give assessors a clearer view of people a treatment may not serve. It could also broaden the assessment beyond clinical performance alone. Manfredi’s concern was who receives the benefit, not only whether a medicine works.

A programme for a Canary Islands conference report also covered law and health research, with digital health among the topics. These discussions reach beyond medicine into the systems that determine how evidence enters practice. In plain terms, assessment should track who gains, who is missed and whose needs remain unanswered.

What can lived experience add?

Patient-generated data can add context to clinical evidence, especially when someone has psoriasis alongside another condition. Standard trial findings may not fully capture that combination or the realities of managing treatment.

When psoriasis occurs alongside other conditions, patient-generated data can add context to safety, possible interactions, treatment burden and the practical demands of daily self-care. Comorbidity changes the circumstances in which a treatment must work safely and sustainably.

Manfredi said these circumstances matter when assessing medicine safety, including possible interactions. They also matter when reviewers weigh the burden of treatment. Quality of life needs attention because patients experience illness as part of their wider lives.

Clinical evidence can describe treatment effects. Lived experience can show how those effects fit into daily life. In plain terms, patient data helps explain what a treatment means inside a person’s life.

Can Spain narrow access gaps?

Access is the most concrete policy demand in the interview. Manfredi called on Spain’s Ministry of Health to guarantee common minimum standards across the country.

He said inequalities exist both between Spain’s autonomous communities and within them. Andalusia, his home region, was his example of a place with significant disparities. The concern therefore spans national consistency and local differences at the same time.

Reducing those gaps requires action by public authorities and healthcare professionals, he said. Patient associations also have a role. Manfredi pointed to technology and therapeutic innovation as parts of the effort.

His proposal combines a national floor with local attention. A common standard must apply consistently, while regional disparities still need direct action. In plain terms, Spain needs common standards and local action, not promises of uniformity.

What could change now?

The interview did not test a treatment or report a clinical result. It centered on proposals for research design, health technology assessment and access.

The first practical step Manfredi proposed is simple: bring patients into projects before major decisions are fixed. The next is to use their evidence when assessing safety, treatment burden and benefit. The third is to ask Spain’s Ministry of Health to apply common minimum standards across autonomous communities and within them.

That agenda leaves questions for research institutions, assessors and public authorities. They would need to show how patient participation affected decisions and whether differences in access narrowed.

Patient associations could also test whether the proposals reach women, children and people living with several conditions. Manfredi’s message was less about a single intervention than about who holds influence.

His argument is that patients bring knowledge that can add context to clinical evidence, and that knowledge should shape both the evidence and its use. If institutions act on that proposal, early patient involvement and measurable access standards will be the clearest signs of progress.