Close James B, Bornemann Julia, Piggin Maria, Jayacodi Sandra, Luan Lisa Xiaolu, Carhart-Harris Robin, Spriggs Meg Jo
Centre for Psychedelic Research, Division of Brain Sciences, Imperial College London, London, United Kingdom.
Patient Experience Research Centre, Imperial College London, London, United Kingdom.
Front Psychiatry. 2021 Sep 30;12:727496. doi: 10.3389/fpsyt.2021.727496. eCollection 2021.
Within the context of scientific research, patient and public involvement (PPI) is defined as research performed "with" or "by" patients and members of the public, rather than "to," "about", or "for" them. When carried out systematically and thoughtfully, PPI has the potential to strengthen the quality and impact of research by fostering accountability, transparency, and relevance. There exist numerous guidelines, frameworks and tools for supporting PPI, however, these do not account for the unique challenges faced in psychedelic research. This paper describes the co-design of guidance intended to help build, evaluate and improve PPI in psychedelic research. A steering group was formed to design and run a co-design workshop alongside public collaborators. Insights from this workshop were analyzed and refined into a comprehensive and readily usable guide for planning PPI specific to the field of psychedelic research. Core values emerging from the process focused on the essential importance of trust, learning, purpose and inclusivity. It is hoped that this guidance will be a starting point for incorporating PPI in future psychedelic research, so that it can grow and adapt as this burgeoning field of research progresses.
在科学研究的背景下,患者及公众参与(PPI)被定义为与患者及公众一起开展或由他们开展的研究,而非针对、关于或为了他们开展的研究。如果系统且周全地实施,PPI有潜力通过促进问责制、透明度和相关性来提升研究的质量和影响力。有许多支持PPI的指南、框架和工具,然而,这些并未考虑到迷幻剂研究中面临的独特挑战。本文描述了旨在帮助构建、评估和改进迷幻剂研究中PPI的指南的共同设计。成立了一个指导小组,与公众合作者一起设计并举办了一次共同设计研讨会。对此次研讨会的见解进行了分析,并提炼成一份全面且易于使用的指南,用于规划迷幻剂研究领域特有的PPI。该过程中浮现的核心价值观聚焦于信任、学习、目的和包容性的至关重要性。希望本指南将成为在未来迷幻剂研究中纳入PPI的起点,以便随着这个新兴研究领域的发展,PPI能够不断成长和适应。