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

delpacibart braxlosiran FSHD
Delpacibart Braxlosiran FSHD Shows Promise in Disease Modification

By João L. Carapinha

June 11, 2026

Novartis has achieved a key clinical milestone with delpacibart braxlosiran FSHD, as its FORTITUDE biomarker cohort successfully met the primary endpoint by substantially suppressing DUX4-driven gene expression and reducing muscle damage markers in patients with facioscapulohumeral muscular dystr...
athlete risk stratification
Advancing Athlete Risk Stratification with Predictive Frameworks

By João L. Carapinha

June 11, 2026

Athlete risk stratification now integrates epidemiological evidence, explainable artificial intelligence, and mechanistic cardiac models to better protect young competitors. This convergence offers a path to distinguish healthy athletic remodeling from hidden substrates that can trigger fatal arr...
Innovative Therapies Access Portugal
Evaluating Innovative Therapies Access in Portugal

By João L. Carapinha

June 11, 2026

According to Paulo Gonçalves in the APIFARMA newsletter, Innovative Therapies Access in Portugal directs resources toward therapeutic innovation at levels substantially below feasible ambitions. Protracted authorization processes impose measurab...