Patient-based evidence: its role in decision making on end-of-life, orphan, and ultra-orphan medicines.

ABSTRACT:

Objectives

The Scottish Medicines Consortium (SMC) conducts early health technology assessment (HTA) of new medicines on behalf of NHSScotland. Assessment of end-of-life (EoL), orphan, and ultra-orphan medicines includes a process to gather evidence from patients and carers during Patient and Clinician Engagement (PACE) meetings. The output of PACE meetings is a consensus statement describing the medicine's added value from the perspective of patients/carers and clinicians. The PACE statement is used by SMC committee members in decision making. This study compared how PACE participants and SMC committee members rate the importance of information in PACE statements for these medicines.

Methods

A survey was undertaken of patient group (PG) representatives and clinicians who pa

SUBMITTER: Hems S 

PROVIDER: S-EPMC11574533 | biostudies-literature | 2023 Apr

REPOSITORIES: biostudies-literature