dc.contributor.author | Thomson, A | en_US |
dc.contributor.author | Horne, R | en_US |
dc.contributor.author | Chapman, C | en_US |
dc.contributor.author | Bharadia, T | en_US |
dc.contributor.author | Burke, P | en_US |
dc.contributor.author | Colwell, E | en_US |
dc.contributor.author | Harrington, M | en_US |
dc.contributor.author | Boskovic, B | en_US |
dc.contributor.author | Stennett, A | en_US |
dc.contributor.author | Baker, D | en_US |
dc.contributor.author | Giovannoni, G | en_US |
dc.contributor.author | Schmierer, K | en_US |
dc.date.accessioned | 2024-05-22T13:11:58Z | |
dc.date.available | 2024-05-19 | en_US |
dc.date.issued | 2024-06-18 | en_US |
dc.identifier.uri | https://qmro.qmul.ac.uk/xmlui/handle/123456789/97011 | |
dc.description.abstract | BACKGROUND: Solving complex research challenges requires innovative thinking and alternative approaches to traditional methods. 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 million 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. 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 "Under & Over" rehabilitation tool, allowing individuals with advanced MS to participate in a remote rehabilitation program.The impact of the ThinkHand campaign has been significant, helping to shift the focus of both academic and industry-supported trials, including the O'HAND and ChariotMS trials, both using upper limb function as their primary end point. The campaign's patient-centred approach highlighted the importance of recognising patients' 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. 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. | en_US |
dc.format.extent | 62 - ? | en_US |
dc.language | eng | en_US |
dc.relation.ispartof | Res Involv Engagem | en_US |
dc.rights | This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. | |
dc.subject | Clinical trials | en_US |
dc.subject | Co-creation | en_US |
dc.subject | Design | en_US |
dc.subject | Multiple Sclerosis | en_US |
dc.subject | Patient public involvement | en_US |
dc.subject | Patient-centred | en_US |
dc.subject | Public engagement | en_US |
dc.title | Engaging a community to focus on upper limb function in people with multiple sclerosis: the ThinkHand campaign case study. | en_US |
dc.type | Article | |
dc.identifier.doi | 10.1186/s40900-024-00586-y | en_US |
pubs.author-url | https://www.ncbi.nlm.nih.gov/pubmed/38886857 | en_US |
pubs.issue | 1 | en_US |
pubs.notes | Not known | en_US |
pubs.publication-status | Published online | en_US |
pubs.volume | 10 | en_US |
dcterms.dateAccepted | 2024-05-18 | en_US |
rioxxterms.funder | Default funder | en_US |
rioxxterms.identifier.project | Default project | en_US |