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Patient perspectives of patient engagement in medicine development: a qualitative study
Fatima I Auwal1,2, Elizabeth J Clark1, Caroline S Copeland1
1Centre for Pharmaceutical Medicine Research, King's College London, London, UK.
Introduction:
Patient engagement (PE) is increasingly recognized as an essential component of medicine development, yet there remains limited empirical evidence on its value from the patient perspective. Existing literature points to benefits such as empowerment, improved trial design, and greater acceptability, but challenges around communication, authenticity, and sustainability persist.
Objectives:
This study explored the perceived value, challenges, and strategies for effective PE from the perspective of patients, carers, and patient advocates involved in medicines development.
Methods:
A qualitative study was conducted using semi-structured interviews on Microsoft Teams. Participants were recruited via LinkedIn and academic networks if they had lived experience of a health condition, caregiving responsibilities, or advocacy roles and had engaged with the pharmaceutical industry. Twenty-two interviews were conducted online between 23 April and 26 November 2024, recorded, transcribed, and analyzed using reflexive thematic analysis.
Results:
Six overarching themes and 23 sub-themes were identified covering participants' understanding, motivations, initiatives, value, challenges and strategies for being involved. Engagement was valued for enhancing clinical trial outcomes, personal empowerment, and community support. Challenges included structural barriers, tokenism, lack of feedback, and inconsistent practices across companies and patient organizations. Strategies to improve PE emphasized clear communication, simplification and formalization of processes, greater inclusivity, capacity building, and stronger alliances among advocacy groups. Participants also highlighted the need for fair compensation and balancing regulation with meaningful involvement.
Conclusions:
Patients perceive PE as transformative when authentic, inclusive, and supported by transparent communication. Addressing structural inconsistencies, recognizing diverse patient identities, and prioritizing relational over transactional approaches are critical for embedding meaningful and sustainable PE in medicine development.
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