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PPI in LifeMap-QUEST: an example of co-producing videos in different languages to support inclusion in a clinical
David C Clayton1, William B Nicolson2, Sarah Anthony3
1Cardiovascular Sciences, School of Medical Sciences, University of Leicester, University Road, Leicester, LE1 7RH, UK. dcc25@leicester.ac.uk.
Abstract:
Recruiting participants into clinical trials is often challenging, particularly when trying to involve people from diverse or disadvantaged communities. This article describes how we co‑produced video resources to support inclusion in the LifeMap‑QUEST clinical study. LifeMap is a new approach to diagnosing people who may be at risk of Sudden Cardiac Death (SCD). Recognising the longstanding under‑representation of ethnic minority groups in research, and the barriers posed by language, literacy, and trust, the LifeMap‑QUEST Patient and Public Involvement (PPI) Advisory Group worked with community partners and clinicians to develop participant information videos in English, Gujarati, and Hindi. This article explains how this collaborative process unfolded. As part of our co‑production approach, we tested AI translation tools such as ChatGPT. However, the translations produced were too formal, used complex terminology, and did not capture the tone or cultural context needed. We therefore adopted a collaborative method with a local charity, South Asian Health Action (SAHA), using forward–back translation, validation by native speakers within the PPI Advisory Group, and review by cardiac consultants who spoke Gujarati and Hindi. This ensured both accuracy and cultural appropriateness. Filming used a simple “talking‑head” style to create a friendly, approachable tone. Members of the PPI Advisory Group reviewed the videos and offered constructive feedback. The article highlights the challenges of developing participant information in multiple languages, emphasising the need for PPI, community partners, and expert clinical oversight. We hope that by describing what we did and the lessons we learnt, it will support others to make participant information videos in different languages.
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