How do patients and other members of the public engage with the orphan drug development? A narrative qualitative synthesis.

ABSTRACT:

Background

The diversity of patient experiences of orphan drug development has until recently been overlooked, with the existing literature reporting the experience of some patients and not others. The current evidence base (the best available current research) is dominated by quantitative surveys and patient reported outcome measures defined by researchers. Where research that uses qualitative methods of data collection and analysis has been conducted, patient experiences have been studied using content analysis and automatic textual analysis, rather than in-depth qualitative analytical methods. Systematic reviews of patient engagement in orphan drug development have also excluded qualitative studies. The aim of this paper is to review qualitative literature about how patients and

SUBMITTER: Frost J 

PROVIDER: S-EPMC10108537 | biostudies-literature | 2023 Apr

REPOSITORIES: biostudies-literature