On 3^rd and 4^th September Dr. Orla Galvin, Executive Director of the European Federation of Neurological Associations (EFNA), alongside David Schwicker, expert for accelerating clinical development, authorisation, and patient access for orphan and advanced therapy medicinal products and founder of Principal ORPHA Strategy Consulting, r led a highly productive two-day workshop focused on advancing the use of Patient Experience Data (PED) in healthcare decision-making. The event brought together EFNA’s Community Advisory Board (CAB) members and its industry partners to explore this critical topic.

The workshop was marked by insightful discussions and interactive sessions, where participants actively engaged with the presented material. The agenda centered on patient engagement and involvement, with a strong emphasis on how Patient Experience Data can inform and shape healthcare decisions. Numerous real-world examples were shared, highlighting the value of integrating PED into practice.

Stakeholder perspectives on Patient Experience Data were explored in depth, with key concepts such as Concepts of Interest (COI), Clinical Outcome Assessments (COA), and Patient-Reported Outcomes (PRO) being thoroughly explained and discussed. These sessions offered participants a deeper understanding of how PED can enhance patient-centered care and drive improved outcomes.

The high level of participation in the interactive portions of the workshop reflected the enthusiasm and commitment of the attendees. By the end of the event, everyone had gained new knowledge and insights into the evolving role of patient experience data in healthcare.

With such a positive outcome, this workshop represents an important step in promoting the meaningful use of patient experience data in healthcare decision-making across Europe.