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. 2021 Sep 30:12:727496.
doi: 10.3389/fpsyt.2021.727496. eCollection 2021.

Co-design of Guidance for Patient and Public Involvement in Psychedelic Research

James B Close  1 , Julia Bornemann  1 , Maria Piggin  2 , Sandra Jayacodi  3 , Lisa Xiaolu Luan  1 , Robin Carhart-Harris  1 , Meg Jo Spriggs  1
Affiliations

Co-design of Guidance for Patient and Public Involvement in Psychedelic Research

James B Close et al. Front Psychiatry. .

Abstract

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.

Keywords: PPI; guideline; involvement; patient; psychedelics; public; research; strategy.

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Conflict of interest statement

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Figures

Figure 1
Figure 1
A diagram to illustrate the aim of the co-design workshop. Workshop activities (outer ring) focused on issues related to public contributors and PPI in psychedelic research (middle ring), rather than participants enrolled on a psychedelic study (inner circle).
Figure 2
Figure 2
A scaled version of the conceptual map of content from the co-design workshop. Themes are grouped into four distinct but interrelated areas defined by core values of trust, purpose, inclusivity, and learning.
Figure 3
Figure 3
Values, principles, principles in practice, and suggestions for patient and public involvement in psychedelic research. Every value is relevant to all four areas of PPI and also bring more specific principles on which to build specific actions.
See this image and copyright information in PMC

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