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 order 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.
A group of African and Caribbean people decided to tell mental health workers and others in east London about their struggles to achieve mental health. They wanted to show that black people with mental health problems are individuals, with different histories and different talents. They wanted to show that it is possible for African and Caribbean service users to rebuild their lives after a mental health crisis and even after years in and out of hospital. In this article, Zhenreenah Muhxinga describes how they produced a book of stories to challenge the familiar assumption that recovery is not an option for black people.
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