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A tool to evaluate the impact of lived experience involvement in research: the Brain and Genomics Hub Impact Log
Tania Gergel1,2,3, Talen Wright2,4, Lavenda Geshica5,6,7
1University College London Division of Psychiatry, London, England, UK.
Background:
Despite widespread recognition of the value of lived experience involvement (LEI) in healthcare research and increased LE involvement activity, we lack established implementation methods and instruments for reporting and evaluating impact. We present a protocol for an innovative LE-led Impact Log tool and LEI framework, which may help to address some fundamental barriers to LEI. The Impact Log will be implemented within a five-year multidisciplinary transdiagnostic research project on severe mental illness and is also designed for wider adaptation and use. We include a short literature review on LEI impact, to provide in-depth background.
Methods:
The Impact Log framework is designed to integrate inclusive impactful LEI throughout all research stages, and to use a short accessible form to record and evaluate impact across three domains: design and delivery; interpersonal and environmental aspects; systems and processes. Impact Log tool and LEI design and implementation is led by LE study leads and specialist LE advisory panel, with combined research experience and LE, fully integrated within the wider research team. All Hub research participants will be offered accessible opportunities for remunerated lived experience input, and there will be outreach to ensure diverse representation, aided by the Hub's charity partners. Data collection and analysis will be LE led and will include iterative analysis to inform continuing development. Diverse formal and informal dissemination throughout the project will maximise wider stakeholder engagement.
Conclusion:
The potential value of this research is to implement a novel tool and framework for facilitating, recording and evaluating LEI in complex mental health research, which can be adapted for wider use. Strengths in design are LE leadership and cross-cutting LE research integration, incorporation of multiple domains, and a focus on facilitating diversity and inclusion within LEI. Potential limitations for this project and wider adaptation may include limited resources, risk of bias and health challenges.
