{ "abstract": "Background\n\nDespite 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\n\nThe 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\n\nThe 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.", "abstract_shown": true, "affiliations": [ "University College London Division of Psychiatry, London, England, UK.", "Bipolar UK Ltd, London, England, UK.", "Centre for Neuropsychiatric Genetics and Genomics, Cardiff University Division of Psychological Medicine and Clinical Neurosciences, Cardiff, Wales, UK.", "School of Epidemiology and Public Health, University of Ottawa Faculty of Medicine, Ottawa, Ontario, Canada.", "Brain and Genomics Hub, Specialist Lived Experience Advisory Panel, Cardiff, UK.", "University of Glasgow School of Health and Wellbeing, Glasgow, Scotland, UK.", "Faculty of Psychology, Universitas Gadjah Mada, Yogyakarta, Indonesia.", "Division of Nursing, Midwifery and Social Work, The University of Manchester School of Health Sciences, Manchester, England, UK.", "EPPI Centre, University College London Social Research Institute, London, England, UK.", "Independent Researcher, London, UK.", "Caprich International, Markham, Canada.", "University of Oxford Department of Psychiatry, Oxford, England, UK.", "Adferiad, Colwyn Bay, Wales, UK.", "DATAMIND, Swansea University Faculty of Medicine Health and Life Science, Swansea, Wales, UK.", "National Centre for Suicide and Self-Harm Research, Swansea, Wales, UK." ], "article_type": null, "arxiv": null, "author_total": 19, "authors": [ { "affs": [ 0, 1, 2 ], "name": "Tania Gergel", "orcid": "0000-0001-9155-8277" }, { "affs": [ 1, 3 ], "name": "Talen Wright" }, { "affs": [ 4, 5, 6 ], "name": "Lavenda Geshica", "orcid": "0000-0003-3249-8803" }, { "affs": [ 4, 7 ], "name": "Emily Vicary", "orcid": "0000-0001-9683-3880" }, { "affs": [ 4, 8 ], "name": "Jaycee Kennett", "orcid": "0000-0002-7312-8676" }, { "affs": [ 4, 9 ], "name": "Oli Delgaram-Nejad" }, { "affs": [ 4 ], "name": "Carina Edwards" }, { "affs": [ 4, 10 ], "name": "Hashwin V S Ganesh" }, { "affs": [ 11 ], "name": "Thomas Kabir", "orcid": "0000-0001-8908-0964" }, { "affs": [ 12 ], "name": "Chloe L Harrison", "orcid": "0000-0003-0134-633X" }, { "affs": [ 12 ], "name": "James Heard" }, { "affs": [ 2 ], "name": "Georgia Dash" }, { "affs": [ 2 ], "name": "Catherine Bresner" }, { "affs": [ 2 ], "name": "Ian Jones" }, { "affs": [ 2, 11 ], "name": "Jeremy Hall" }, { "affs": [ 13, 14 ], "name": "Ann John", "orcid": "0000-0002-5657-6995" }, { "affs": [ 2 ], "name": "Neil A Harrison", "orcid": "0000-0002-9584-3769" }, { "affs": [ 2 ], "name": "James T R Walters" }, { "affs": [ 2 ], "name": "Sophie E Legge", "orcid": "0000-0001-6617-0289" } ], "bibtex": "https://research.draconitic.com/paper/f781t1dg88ffn.bib", "cited_by": 0, "doi": "10.12688/wellcomeopenres.27426.2", "fulltext_url": "https://europepmc.org/articles/PMC13694935", "id": "f781t1dg88ffn", "issns": [ "2398-502X" ], "landing_url": "https://europepmc.org/article/MED/42928742", "language": "eng", "licence": "CC-BY", "licence_label": "CC BY", "licence_source": "article", "licence_url": "https://creativecommons.org/licenses/by/4.0/", "metadata_licence": null, "native_subjects": [ [ "lcc", "Q" ], [ "lcc", "R" ], [ "openalex", "3600|Mental Health and Patient Involvement" ] ], "openalex": "W7221769385", "pdf_url": "https://europepmc.org/articles/PMC13694935?pdf=render", "pmcid": "PMC13694935", "pmid": "42928742", "published": "2026-10-14", "publisher": "Wellcome", "ris": "https://research.draconitic.com/paper/f781t1dg88ffn.ris", "sources": [ { "first_seen": "2026-10-30T12:21:18Z", "native_id": "MED:42928742", "source": "europepmc", "url": "https://europepmc.org/article/MED/42928742" }, { "first_seen": "2026-10-30T13:44:37Z", "native_id": "e03de7e0156d4ea4b0ca3bc6b9f2345b", "source": "doaj", "url": "https://doi.org/10.12688/wellcomeopenres.27426.2" } ], "subjects": [ { "field": "medicine", "origin": "lcc:R", "subfield": "general" } ], "title": "A tool to evaluate the impact of lived experience involvement in research: the Brain and Genomics Hub Impact Log protocol.", "title_text": "A tool to evaluate the impact of lived experience involvement in research: the Brain and Genomics Hub Impact Log protocol.", "type": "peer-reviewed", "updated_at": "2026-10-30T13:44:37Z", "url": "https://research.draconitic.com/paper/f781t1dg88ffn", "venue": "Wellcome open research", "versions": [] }