A tool to evaluate the impact of lived experience involvement in research: the Brain and Genomics Hub: Impact Log literature review and protocol.

BackgroundDespite widespread recognition of the value of lived experience (LE) involvement 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 co-production framework, which may help to address some fundamental barriers to co-production. The Impact Log will be implemented within a five-year multidisciplinary transdiagnostic research project on severe mental illness, the Brain and Genomics Hub of the UKRI Mental Health Platform, and is also designed for wider adaptation and use. Part I presents a short narrative review of literature pertaining to defining, evaluating, and enhancing the impact of co-production, to provide in-depth background and aid future development. Part II presents the Impact Log protocol. MethodsThe Impact Log framework is designed to integrate inclusive and impactful co-production throughout all research stages, and to record and evaluate its impact across three domains using an accessible short form. The three research domains are: design and delivery; interpersonal and environmental aspects; systems and processes. Impact Log design and implementation is led by LE study leads and a specialist advisory panel, who are integrated fully within the wider research team, and all have combined research experience and LE of bipolar or psychotic disorders. 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 Hubs 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. DiscussionThe potential value of this research is to implement a novel tool and framework for facilitating, recording and evaluating co-production 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 co-production. Potential limitations for this project and wider adaptation may include limited resources, risk of bias and health challenges. Lay SummaryWe have provided a brief lay summary to help people without a research background understand our project. This article explains our plan to develop and test a new way of understanding how research changes when people with personal experience of a mental health condition are part of the research team. We are a team of mental health researchers and many of us have direct experience of bipolar and psychosis. We work alongside other researchers, including people who might also have worked in mental health services or in charities that provide support. Our research project aims to better understand what is happening in the brain, body, lives and experiences of people who have bipolar and psychosis. Many people believe that research is better when it includes the views of people who have direct experience of the health condition being studied. This is called "lived experience". We have developed a structured approach to make sure that people with lived experience are meaningfully involved in our research team. We have also created a simple tool, called the Impact Log, to record when lived experience members contribute and to help us understand how their involvement influences the research. Finally, we wanted to better understand what other researchers have said about lived experience involvement. We reviewed many published academic studies and reports and brought their findings together in what is called a "narrative review". This review summarises what is already known about the difference lived experience involvement can make in research.