Background: Patient-oriented research (POR) and patient engagement (PE) have been increasingly adopted over recent decades, as they generate many positive academic and patient outcomes within various health research fields. While there has been research on the barriers and challenges experienced by patient partners (PPs), we know little about the experiences of the health researchers working with them. It is therefore important to gain a better understanding of the experiences of health researchers who work with PPs to improve their collaboration. This study, which was initiated by PPs themselves, aims to enhance the understanding of health researchers' experiences regarding the challenges of working with PPs.
Methods: This qualitative descriptive study involved 20 semi-structured interviews with researchers from various health science fields, such as primary care and general medicine, public health and health policy, specialized medical fields (i.e. cancerology, endocrinology, psychiatry, gerontology), biomedical engineering and medical technologies, and neuroscience. Participants, including researchers and research coordinators, were recruited through purposive sampling via email, newsletters, and social media, with their participation being voluntary and uncompensated. Thematic analysis was conducted over multiple steps, and the interview transcripts were coded to identify the main themes and subthemes relevant to the study's aims.
Results: The analysis resulted in six main themes: 1) PP individual and health-related challenges; 2) institutional barriers to PP involvement; 3) challenges in genuine PP involvement; 4) collaboration challenges in research projects; 5) time constraints in research projects; and 6) PP recruitment and representation issues.
Conclusion: The findings of this study provide an in-depth view of the challenges experienced by health researchers who have involved PPs in their projects. However, it is important to highlight that this study goes beyond simply identifying challenges. These challenges are often interconnected and complex and influence one another in such a way that controlling for one element may cause further constraints in another. This article provides recommendations regarding current practices, ethics-related questioning, and time-related challenges, which will be useful for the continued meaningful involvement of PPs in research teams and for navigating the challenges.
Keywords: Challenges; Health research; Patient engagement; Patient involvement; Patient partner; Patient-oriented research; Qualitative; Recommendations; Thematic analysis.
Patient-oriented research (POR) and patient engagement (PE) generate many positive academic and patient outcomes within various fields of health research and have gained much recognition in recent decades. Researchers who conduct POR and work with patient partners (PPs) benefit from valuable insights into the subject at hand through their rich encounters with PPs. Meanwhile, there remain some challenges and grey areas within POR—specifically, PE—that need to be explored. Thus, this article, which was initiated by PPs themselves, aimed to explore the barriers and challenges experienced by health researchers collaborating with PPs. Thematic analysis was conducted using 20 semi-structured interviews. The analysis revealed six main themes and their subcategories: PP individual and health-related challenges, institutional barriers to PP involvement, challenges in genuine PP involvement, collaboration challenges in research projects, time constraints in research projects, and PP recruitment and representation issues. These challenges are often interconnected, complex, and influence one another in such a way that controlling for one element may cause further constraints in another. Suggestions regarding current practices, ethics-related matters, and time-related challenges are discussed with the hope of encouraging the inclusion of PPs in research teams and guiding the navigation of the challenges.
© 2025. The Author(s).