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

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.

Self-Medication for Chronic Pain Using Classic Psychedelics: A Qualitative Investigation to Inform Future Research

“…1.1.1 Depression: All contributors reported feelings of depression as part of their everyday life. While some contributors reported feelings of depression preceding their pain (5), all reported that their mental wellbeing and subsequent depression were impacted by the chronification of their pain. Several contributors (3) reported feeling suicidal due to their pain.…”

“…1.2.2 Acceptance of Pain: Seven contributors reported increased acceptance of their situation and found this to be helpful in their general experience of pain. 1.2.5 Increased Compassion: Eight contributors felt more compassion toward themselves (6) and others (5).…”

“…Release: All contributors reported some form of perceived physical release through crying (3), tingling (5), vocalization (2), change in temperature (1), and release of muscular tension (5).…”

“…2.3.2 Quality of Life: All contributors claimed improvements in their quality of life. This presented itself through increased function (5), independence (1), energy (5), and ability to move (4). Two contributors also reported perceived enhancements in cognitive performance (2).…”

Study Protocol for “Psilocybin as a Treatment for Anorexia Nervosa: A Pilot Study”

“…While this trial is one of many exploring psychedelics in mental health treatment, we wish to emphasise how incorporating the voices of those with lived experience has not been beneficial for adapting the psychedelic-therapy approach to this population, but has also been a rewarding experience for researchers and focus group attendees alike. We encourage the integration of PPI initiatives into future psychedelic research, and guidance for doing so has been presented by Close et al (59).…”