How Lived Experience can help Neuroscience Become More Relevant to Mental Health [post]

Richard Humm, June Hanshaw, Isaac Samuels, Rosemary Amuda, Claudette Brandon, Ted Oliver, Syeda Tahir, Zhenreenah Muhxinga, Joanne Thomas, Sophie Perry, Cassandra Hugill, Sally Barlow (+1 others)
2020 unpublished
Background: Translational neuroscience aims to make discoveries about the brain that will benefit health, especially mental health. Up to now, however, translational neuroscience studies have been designed with very little input from stakeholders who have lived experience of mental health problems. To address this serious gap, stakeholder participation needs to take place at many levels, as it does in service-oriented studies. Methods: We convened a 'Lived Experience Advisory Panel' (LEAP) in
more » ... der to improve the design of a new study about people's decision to trust in and continue with, or to stop, psychotherapy treatments. Results: The LEAP productively challenged the ecological validity and relevance of the study design, increasing its potential to improve mental health and to attract research funding. It helped determine the place of lived experience experts in multiple roles within the study throughout its duration. It also helped improve relevance by refining the framing of the therapy-like tasks within the study, and by improving the specification of the study population. LEAP discussions informed the pathways to impact first the consultation process itself, and then the new study. The LEAP convened during the COVID-19 lockdown and its remote work process, described here, demonstrates both the potential for greater involvement of stakeholders in research design, but also some difficulties which future collaborations should address.Conclusion: Involvement of relevant stakeholders very early in the process of designing this research study has improved the study design and its potential to bring positive impacts to those stakeholders. This should be considered broadly across research fields and particularly within translational neuroscience, where limited input by stakeholders with lived experience of mental health problems have been sought to date.
doi:10.21203/ fatcat:sxprc6qmafb2zb4vfehjx7ldrq