Patient Centricity in Medicines Development
Research type
Research Study
Full title
Patient Centricity in Pharmaceutical Company Activities during Medicines Development
IRAS ID
324109
Contact name
Ravi Jandhyala
Contact email
Sponsor organisation
Medialis Ltd
Duration of Study in the UK
0 years, 5 months, 29 days
Research summary
Over the last ten years, there has been a significant interest in the patients' involvement and centricity in all aspects of healthcare, including medicine development, health service provision, and academic research. While many healthcare organisations, funders, and patient groups have embraced the concept of patient centricity, it has been suggested that pharmaceutical companies have not necessarily displayed similar levels of success with respect to patient centricity.
It has been suggested that when patients and real-world evidence are not involved in the medicine development process, it might have implications for reimbursement, as well as the medicine adoption process. Hence, it is important to ensure patients are at the core of the medicine development process.
This observational study will recruit participants to contribute the data required to create a consensus definition of patient centricity in medicines development. In total, up to 30 people with lived experience of rare diseases, or people supporting patients with lived experience of rare diseases (carers), and people representing rare diseases' patient organisations, are expected to be recruited to the study. All participants will also be asked to complete a demographic questionnaire to inform the analysis of the data.
REC name
North East - Tyne & Wear South Research Ethics Committee
REC reference
23/NE/0024
Date of REC Opinion
10 Jan 2023
REC opinion
Favourable Opinion