Gathering and analyzing patient experience data in a real-world setting is a key challenge for many

By HEOR Staff Writer

January 18, 2023

Gathering and analyzing patient experience data in a real-world setting is a key challenge for many. To explore this further, ISPOR in Vienna held a second plenary panel featuring experts in the field. What did they discuss?

The panel discussed the importance of rigor in choosing, implementing, and analyzing patient experience data in non-randomized, uncontrolled study designs. Dr. Burgos spoke about the Darwin EU initiative and the importance of stakeholder engagement and capacity building to facilitate patient experience data collection. Professor Devlin discussed the implementation of patient-reported outcome data capture and the PROMs initiatives in the UK, Canada, and New Zealand. Dr. Perfetto spoke about the Core Impact initiative in the US, which standardizes patient experience data collection and the use of core outcome sets.

The panel highlighted the need for further guidance and collaboration with stakeholders to ensure patient experience data is used to inform regulatory decision-making.

Reference url

Recent Posts

Belgium Fast Access Medicines
Belgium Fast Access Medicines Revolutionize Treatment for IgA Nephropathy

By João L. Carapinha

July 1, 2026

Belgium Fast Access Medicines has moved from policy to practice. Authorities have granted temporary reimbursement to Atrasentan, the first therapy approved under the new Early and Equitable Fast Access procedure, offering quicker hope to patients with IgA nephropathy while anchoring the country’s...
Retracted Trial Publication
Retracted Trial Publication Undermines Support for Avacopan in AAV Treatment

By João L. Carapinha

July 1, 2026

The Retracted Trial Publication of the ADVOCATE study has eliminated the central evidence that supported approval of Tavneos (avacopan) for severe active anti-neutrophil cytoplasmic autoantibody-associated vasculitis (AAV). At the request of two lead academic authors, the
regulatory validation taletrectinib
Advancing Regulatory Validation Taletrectinib for Enhanced NSCLC Treatment

By João L. Carapinha

June 30, 2026

The MHRA’s validation of Nuvation Bio’s marketing authorisation application marks an important regulatory validation taletrectinib for adults with advanced ROS1-positive non-small cell lung cancer. This milestone, achieved via the International Recognition Procedure in parallel with EMA review, f...