Evaluation of the Patient Innovation Partner Role: Perceived Benefits, Structures, Supports, and Recommendations for Lived Experience Engagement in Healthcare Innovation Teams

Abstract

Background

Patient engagement plays a valuable role in health research and quality improvement. While prior research highlights some principles and key considerations for patient involvement in these efforts, there is a limited understanding of how best to structure and support this engagement, especially from the patient perspective and for healthcare innovation projects.

Methods

Transcripts and notes from semi-structured debrief interviews with patient partners (n = 14) and team leads (n = 22) of 14 healthcare innovation projects conducted between 2020 and 2023 were analyzed thematically to identify perceived benefits, structures and supports that shape lived-experience engagement, and recommendations for future patients' participation in healthcare innovation teams.

Results

Lived-experience engagement was perceived as highly valuable to project teams and rewarding to the patients themselves. Approaches for structuring and supporting the patient role shaped engagement, highlighting several strategies (e.g., providing patient partners with opportunities to reflect and prepare, having smaller check-ins, truly getting to know the patient, and offering opportunities for in-person connection) to enhance the experience and ameliorate challenges. Patients also emphasized the importance of sharing their perspectives to fully realize the benefits of their engagement.

Conclusion

These findings highlight the importance of recognizing the bidirectional benefits of patient engagement within project teams. Taking opportunities to check in with patients throughout the project period, both formally and informally, regarding their preferences for involvement and experiences on the team would enable real-time feedback and adjustments to optimize patient partner engagement.

Patient or Public Contribution

Since its inception, the Susan and Richard Levy Healthcare Delivery Incubator has incorporated patient and public involvement into the design and operations of its healthcare innovation projects. While the conceptualization of this analysis did not engage patients or the public, patients and individuals with lived experience provided the data. Further, three patient partners were engaged in the review of the findings, two of whom also actively contributed to the preparation of the manuscript by reviewing drafts, adding content, and making revisions.