From input to impact: embedding PPI in computational ovarian cancer research
Abstract
Public and Patient Involvement (PPI) is increasingly recognised as a valuable component of health research, yet there are no published examples of its implementation in computational biology. In this study, we detail how we embedded the perspectives of those affected by ovarian cancer into a biomarker discovery project. Throughout this process, PPI partners gave practical guidance on prioritizing research areas, developing study materials and contributing as co-authors on both patient information leaflets and this publication. To ensure this involvement was meaningful and inclusive, we prioritized three key strategies. Firstly, the research team placed significant emphasis on flexibility in order to facilitate accessible participation. We offered online and in-person formats, utilised explanatory videos, scheduled around PPI team availability, and held 1-to-1 “catch-up” sessions for new members. This emphasis on flexibility enabled PPI partners to contribute to the project on their own terms and helped to build trust with the research team. Secondly, we came up with ways to value PPI contributions beyond monetary reimbursement. PPI partners were compensated for their time and expenses; however, we also supported personal learning goals through “journal club” videos and interactive sessions with other researchers. These methods of appreciation helped to promote the individual goals of each contributor and ensure that the collaboration was mutually beneficial for both…
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