DOI: 10.6084/m9.figshare.29627665
title: From insight to impact: a qualitative study on pharmaceutical industry professionals’ perceptions of the value of patient engagement

description: Patient engagement (PE) is increasingly recognised as a critical component of clinical research and pharmaceutical development. However, its implementation remains inconsistent, and evidence of its impact limited. This study explored pharmaceutical professionals’ perspectives on the value, challenges, and facilitators of PE in medicine development. Twenty-eight industry professionals from Europe and North America were interviewed online (November 2023–May 2024). Data were analysed using inductive reflexive thematic analysis. The result showed that while PE is acknowledged for its potential in enhancing trial design, patient recruitment and retention, enhancing data quality, regulatory success and market access − the evidence demonstrating its impact in these areas are still limited. Key challenges highlighted were the lack of standardised ways for assessing PE′s value, limited access to patient organisations in some regions, and disparities in regulatory requirements that complicate global adoption. Additionally, practical barriers − such as time, resource constraints, and cultural differences, hinder the implementation of consistent and meaningful engagement practices. The study also identified a number of potential enablers for creating systematic and consistent PE: the use of digital tools, cost-effective engagement methods, culturally sensitive communication approaches, partnerships with patient advocacy groups and the establishment of PE as a recognised scientific discipline. This research emphasised the need for robust methodologies and standardized PE practices to demonstrate return on engagement and its contribution to successful development of innovative medicines. This is a summary of a study about the impact of involving patients in the research and development of new medicines which is becoming more common, but how this is done and how helpful it is varies a lot. In this study, 28 professionals working in the pharmaceutical industry across Europe and North America were interviewed to understand their views on involving patients in the research and development of medicines. The main questions the researchers wanted to answer were: 1. Participants views on patient involvement and its perceived benefits. The participants told us that involving patients can make clinical trials better – for example, by improving study design, helping recruit and retain participants, and supporting regulatory and market access success. However, they also said there isn’t enough clear evidence yet to prove these benefits. 2. Participants views on current barriers to patient involvement. The participants mentioned challenges such as not having standard ways to measure the value of engagement, difficulty working with patient groups in some parts of the world, differences in international regulations, lack of time, limited resources, and cultural differences. Despite these issues, participants saw opportunities to improve, including using digital tools, working more with patient advocacy groups, and making patient involvement a recognised scientific field. This research showed that better tools and more consistent methods are needed to demonstrate the real value of involving patients and to make it a stronger part of developing new medicines.