Patients at the heart of innovation

Patient insights are transforming how healthcare challenges are addressed. When pharma companies work with patients and patient organisations, they gain crucial understanding of the lived experience of disease. This knowledge helps steer research and development in ways that are more relevant, targeted, and meaningful.

Rather than simply being consulted, patients are now co-designers of clinical studies, providing input that helps define study endpoints, improve trial recruitment, and ensure that research priorities align with real-world needs. Their contributions extend beyond data—they shape decisions that affect millions.

Valuing patient expertise

Engagement with patients must be more than symbolic. Meaningful collaboration takes time, effort, and expertise—and it deserves fair recognition. Patients who share their experiences, join advisory boards, ethical committees or participate in strategic discussions should be compensated just like any other professional contributor.

This includes reimbursement for travel, honoraria for their time, and support for the initiatives they lead through patient organisations. These contributions are not favors—they are partnerships that strengthen the healthcare ecosystem.

Why transparency matters

Being open about financial and non-financial relationships between patients, patient organisations, and industry is key to building and sustaining public trust. Transparent practices help dispel misconceptions, ensure accountability, and demonstrate that collaboration serves shared goals—not hidden agendas.

Since 2012, the EFPIA Code has required pharmaceutical companies to disclose all transfers of value—whether in the form of payments or in-kind support—to patient organisations. Many patient organisations also publish the funding they receive or provide such information on the produced materials. These disclosures reflect a shared commitment to integrity.

In the same spirit, EFPIA supports transparency around industry relationships with healthcare professionals, such as payments for educational events, travel, and consultancy roles. Over the past decade, the sector has taken important steps forward in building openness, and this progress must continue.

As patient involvement grows, we call for consistent, Europe-wide standards for disclosing support to patient organisations and individuals. Reporting practices should be clear, accessible, and comparable across countries to help everyone understand the nature and purpose of these collaborations.

A call to action

We urge all healthcare stakeholders—industry, policymakers, and patient organisations—to continue evolving together. Let’s work together toward greater transparency, stronger partnerships, and more meaningful inclusion of patients in every aspect of healthcare decision-making.

By building on the progress we’ve made, we can ensure that patients remain at the center of innovation—and that the systems built around them are as open and trustworthy as they deserve.