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One such example is the problem of arm and hand, or upper limb function in multiple sclerosis (MS), a neurological condition affecting approximately 2.9\u00a0million people worldwide and more than 150,000 in the United Kingdom. Historically, clinical trials and research have focused on mobility and walking ability. This excludes a large number of patients who are wheelchair users, limiting their quality of life and restricting access to possibly helpful medications. To address this issue, the ThinkHand campaign was launched in 2016, aiming to raise awareness about the importance of upper limb function in MS and develop alternative ways to measure, record, and account for hand and arm function changes.<\/jats:p><jats:p>Main body: The campaign utilised innovative strategies at scientific conferences and online surveys to engage people affected by MS, healthcare professionals, charities, and researchers in discussing the importance of preserving upper limb function. Through co-design and interdisciplinary collaboration, the campaign developed new tools like the low-cost cardboard version of the Nine-Hole Peg Test, facilitating remote monitoring of hand function. Additionally, the campaign co-created the \u201cUnder &amp; Over\u201d rehabilitation tool, allowing individuals with advanced MS to participate in a remote rehabilitation program.<\/jats:p><jats:p>The impact of the ThinkHand campaign has been significant, helping to shift the focus of both academic and industry-supported trials, including the O\u2019HAND and ChariotMS trials, both using upper limb function as their primary end point. The campaign\u2019s patient-centred approach highlighted the importance of recognising patients\u2019 perspectives in research and challenged established assumptions and practices. It demonstrated the effectiveness of interdisciplinary collaboration, systems thinking, and co-creation with stakeholders in tackling complex problems.<\/jats:p><jats:p>Conclusion: The ThinkHand campaign provides valuable insights for health research practices. By involving patients at all stages, researchers can gain a deeper understanding of the impact of disease on their lives, identify gaps and focus research on their needs. Experimentation and iteration can lead to innovative solutions, and openness to unconventional methods can drive widespread change. The ThinkHand campaign exemplifies the potential of patient-centred approaches to address complex research challenges and revolutionise the field of MS research and management. Embracing such approaches will contribute to more inclusive and impactful research in the future.<\/jats:p>","DOI":"10.1186\/s40900-024-00586-y","type":"journal-article","created":{"date-parts":[[2024,6,18]],"date-time":"2024-06-18T01:02:44Z","timestamp":1718672564000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":4,"title":["Engaging a community to focus on upper limb function in people with multiple sclerosis: the ThinkHand campaign case study"],"prefix":"10.1186","volume":"10","author":[{"given":"Alison","family":"Thomson","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rachel","family":"Horne","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christine","family":"Chapman","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Trishna","family":"Bharadia","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Patrick","family":"Burke","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elizabeth","family":"Colwell","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mark","family":"Harrington","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bonnie","family":"Boskovic","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andrea","family":"Stennett","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David","family":"Baker","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gavin","family":"Giovannoni","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Klaus","family":"Schmierer","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2024,6,18]]},"reference":[{"issue":"14","key":"586_CR1","doi-asserted-by":"publisher","first-page":"1816","DOI":"10.1177\/1352458520970841","volume":"26","author":"C Walton","year":"2020","unstructured":"Walton C, King R, Rechtman L, Kaye W, Leray E, Marrie RA, et al. 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RH: RH is part of the Horne Family Foundation. CC: None.TB: None.PB: None.EC: None.MH: None.BB: None.AS: None.DB: DB has received honoraria for consultancy from Merck, Novartis, Teva and Sandoz.KS: KS has received research support, through Queen Mary University of London, from Biogen, Merck KGaA, and Novartis, Roche and Sanofi-Genzyme, speaking honoraria from, and\/or served in an advisory role for, Biogen, EMD Serono, IGES UK, Merck KGaA, Novartis, Roche, and Sanofi-Genzyme and Teva; and remuneration for teaching activities from AcadeMe, Medscape and the Neurology Academy.GG: In the last two years, GG has received compensation for serving as a consultant or speaker for or has received research support from Aurinia Pharmaceuticals, Biogen, BMS-Celgene, GlaxoSmithKline, Janssens\/J&J, Japanese Tobacco, Merck KGaA\/EMD Serono, Moderna, Novartis, Sandoz, Sanofi and Roche\/Genentech.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}},{"value":"AT is a design researcher and Senior Lecturer in PPIE at Queen Mary University of London. AT established and leads the Barts MS Patient Advisory Group and was the PI of the Under & Over study.TB is an MS patient advocate and thought leader who provided ongoing support and advice as an ambassador for the ThinkHand campaign, particularly around engagement with the MS community.CC lives with MS and is an Honorary Research Fellow (clinical trials patient communications) at the Blizard Institute.RH, PB, MH, EC and BB live with MS and contributed as members of the Barts MS Patient Advisory Group to the development of ThinkHand activities and writing of this manuscript.AS is a research neuro-physiotherapist at Barts Health NHS Trust and Honorary Clinical Lecturer at Queen Mary University of London and was involved in the Under & Over study.KS is a Professor of Neurology and consultant neurologist. He is a Deputy Director of Clinical Research at QMUL & Barts Health NHS Trust, the Neurology Research lead, and the clinical lead of BartsMS. KS is the chief investigator of ChariotMS.DB is a Professor of Immunology at Queen Mary University of London and is a frequent author of The MS Research Blog.GG is a Professor of Neurology and MS consultant neurologist and runs the MS Selfie website.","order":5,"name":"Ethics","group":{"name":"EthicsHeading","label":"Author information"}}],"article-number":"62"}}