A tool to evaluate the impact of lived experience involvement in research: the Brain and Genomics Hub Impact Log protocol.
15 affiliations
- 1University College London Division of Psychiatry, London, England, UK.
- 2Bipolar UK Ltd, London, England, UK.
- 3Centre for Neuropsychiatric Genetics and Genomics, Cardiff University Division of Psychological Medicine and Clinical Neurosciences, Cardiff, Wales, UK.
- 4School of Epidemiology and Public Health, University of Ottawa Faculty of Medicine, Ottawa, Ontario, Canada.
- 5Brain and Genomics Hub, Specialist Lived Experience Advisory Panel, Cardiff, UK.
- 6University of Glasgow School of Health and Wellbeing, Glasgow, Scotland, UK.
- 7Faculty of Psychology, Universitas Gadjah Mada, Yogyakarta, Indonesia.
- 8Division of Nursing, Midwifery and Social Work, The University of Manchester School of Health Sciences, Manchester, England, UK.
- 9EPPI Centre, University College London Social Research Institute, London, England, UK.
- 10Independent Researcher, London, UK.
- 11Caprich International, Markham, Canada.
- 12University of Oxford Department of Psychiatry, Oxford, England, UK.
- 13Adferiad, Colwyn Bay, Wales, UK.
- 14DATAMIND, Swansea University Faculty of Medicine Health and Life Science, Swansea, Wales, UK.
- 15National Centre for Suicide and Self-Harm Research, Swansea, Wales, UK.
Abstract
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.
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BibTeX
@article{gergel2026tool,
title = {{A tool to evaluate the impact of lived experience involvement in research: the Brain and Genomics Hub Impact Log protocol.}},
author = {Tania Gergel and Talen Wright and Lavenda Geshica and Emily Vicary and Jaycee Kennett and Oli Delgaram-Nejad and Carina Edwards and Hashwin V S Ganesh and Thomas Kabir and Chloe L Harrison and James Heard and Georgia Dash and Catherine Bresner and Ian Jones and Jeremy Hall and Ann John and Neil A Harrison and James T R Walters and Sophie E Legge},
journal = {Wellcome open research},
year = {2026},
month = oct,
doi = {10.12688/wellcomeopenres.27426.2},
url = {https://europepmc.org/article/MED/42928742},
note = {CC BY},
}
RIS
TY - JOUR
TI - A tool to evaluate the impact of lived experience involvement in research: the Brain and Genomics Hub Impact Log protocol.
AU - Tania Gergel
AU - Talen Wright
AU - Lavenda Geshica
AU - Emily Vicary
AU - Jaycee Kennett
AU - Oli Delgaram-Nejad
AU - Carina Edwards
AU - Hashwin V S Ganesh
AU - Thomas Kabir
AU - Chloe L Harrison
AU - James Heard
AU - Georgia Dash
AU - Catherine Bresner
AU - Ian Jones
AU - Jeremy Hall
AU - Ann John
AU - Neil A Harrison
AU - James T R Walters
AU - Sophie E Legge
PY - 2026
DA - 2026/10/14
JO - Wellcome open research
DO - 10.12688/wellcomeopenres.27426.2
UR - https://europepmc.org/article/MED/42928742
AB - 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.
SN - 2398-502X
ER -