Can the Development of Orphan Drugs Include Wider Patient Engagement? A Citizens' Jury to Explore a Promissory Notion
A patient advisory group (PAG) comprising six people with IPF gave input into all aspects of the research design and conduct, including co-design of the Citizens' Jury. Two patients from international patient organisations served as a steering group (SG). Members of both groups provided their interpretations of the study findings and gave insight into their experiences in clinical design and participation.
Authors
- Julia Frost (ORCID: https://orcid.org/0000-0002-3503-5911)
- Catherine J. Pope (ORCID: https://orcid.org/0000-0002-8935-6702)
- Catharina van den Dungen
- Jessica Mandizha (ORCID: https://orcid.org/0000-0002-5218-4732)
- Lauren Asare (ORCID: https://orcid.org/0009-0003-3868-7987)
Institutions
- Francophone University Association (CA)
- University of Exeter (GB)
- Royal Devon & Exeter NHS Foundation Trust (GB)
- Royal Devon and Exeter Hospital (GB)
- Nuffield Health (GB)
- Peninsula College of Medicine and Dentistry (GB)
Publication Details
- Journal
- Health Expectations
- Published
- 2025-12-01
- DOI
- https://doi.org/10.1111/hex.70524
- Primary Topic
- Mental Health and Patient Involvement
- Type
- article
- Field-Weighted Citation Impact
- 0.00