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

NICE Endorses Rozanolixizumab for Myasthenia Gravis Treatment

By João L. Carapinha

May 1, 2026

Rozanolixizumab myasthenia gravis treatment has been recommended by the National Institute for Health and Care Excellence (NICE) as an add-on to standard care for adults with generalised myasthenia gravis (gMG) who are positive for anti-acetylcholine receptor (AChR) or anti-muscle-specific tyrosi...
Accelerating Biotechnology Patient Access in Europe Through Strategic Policy Reforms
The biotechnology patient access gap in Europe remains a critical challenge despite the continent’s scientific excellence. The EU Biotech Act offers a strategic opportunity to accelerate the delivery of advanced therapies — such as radioligand, cell and gene, and RNA-based treatments — from disco...
Insulin Substitution Portugal: Implications of Novo Nordisk’s Discontinuation
INFARMED has informed healthcare professionals about the upcoming discontinuation of several Novo Nordisk insulin products in Portugal and to provide clear guidance on insulin substitution Portugal. On 30 April 2026, INFARMED issued Circular 045/CD/100.20.200 announcing that Novo Nordisk Portu...