背景:解决复杂的研究挑战需要创新思维和传统方法的替代方法。一个这样的例子是手臂和手的问题,或多发性硬化症(MS)的上肢功能,一种神经系统疾病,影响全球约290万人,在英国影响超过15万人。历史上,临床试验和研究集中在行动能力和步行能力。这就排除了大量轮椅使用者的病人,限制他们的生活质量,限制获得可能有用的药物。为了解决这个问题,ThinkHand运动于2016年启动,旨在提高人们对MS上肢功能重要性的认识,并开发替代测量方法,记录,并说明手部和手臂功能的变化。
方法:该活动在科学会议和在线调查中利用创新策略吸引受MS影响的人,医疗保健专业人员,慈善机构,和研究人员讨论保持上肢功能的重要性。通过共同设计和跨学科合作,该运动开发了新工具,例如低成本纸板版的九孔钉测试,便于手功能的远程监控。此外,该运动共同创建了“Under&Over”康复工具,允许具有高级MS的个人参与远程康复计划。ThinkHand运动的影响是巨大的,帮助转移学术和行业支持的试验的重点,包括O\'HAND和ChariotMS试验,两者都以上肢功能为主要终点。该运动以患者为中心的方法强调了在研究中认识患者观点的重要性,并挑战了既定的假设和实践。它证明了跨学科合作的有效性,系统思维,并与利益相关者共同创造解决复杂问题。
结论:ThinkHand活动为健康研究实践提供了宝贵的见解。通过让患者参与所有阶段,研究人员可以更深入地了解疾病对他们生活的影响,找出差距,重点研究他们的需求。实验和迭代可以带来创新的解决方案,对非常规方法的开放可以推动广泛的变化。ThinkHand活动体现了以患者为中心的方法的潜力,以解决复杂的研究挑战,并彻底改变了MS研究和管理领域。采用这种方法将有助于未来更具包容性和影响力的研究。
解决复杂的研究挑战需要创造性思维和新的做事方式。一个这样的挑战是了解多发性硬化症(MS)中手臂和手功能的问题,在英国影响超过150,000的神经系统疾病。在过去,研究主要集中在步行能力上,忽略了许多使用轮椅的人。为了解决这个问题,我们在2016年创建了ThinkHand运动。其目标是提高人们对手和手臂功能对MS(pwMS)患者的重要性的认识,并找到更好的方法来测量这些功能的变化,以便它们可以成为临床试验的结果。这可以为无法行走的pwMS提供更好的治疗途径。这场运动使用了各种方法,包括调查,社交媒体帖子,展览和音乐涉及pwMS,医疗保健专业人员,慈善机构,和研究人员在讨论这些问题。一起工作,他们创建了支持pwMS的工具,特别是那些在疾病的晚期阶段(pwAMS),参与研究并测量他们的手和手臂功能。通过我们专注于患者观点的协作方法,这场运动挑战了旧思想和根深蒂固的实践。研究表明,在研究的各个阶段,涉及pwMS的不同专业领域之间的合作可以帮助解决复杂的问题。这项运动为我们提供了宝贵的健康研究经验。当研究人员倾听患者并尝试新事物时,他们可以更好地了解疾病如何影响人们的生活,并制定更好的解决方案。总之,我们展示了采用以患者为中心的方法如何应对复杂的研究挑战,并改善我们未来研究和管理MS和其他疾病的方式.
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.
METHODS: 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.
CONCLUSIONS: 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.
Solving complex research challenges requires creative thinking and new ways of doing things. One such challenge is understanding the problems with arm and hand function in multiple sclerosis (MS), a neurological condition that affects more than 150,000 in the United Kingdom. In the past, research focused mainly on walking ability, leaving out many people who use wheelchairs.To tackle this issue, we created the ThinkHand campaign in 2016. Its goal was to raise awareness about the importance of hand and arm function for people with MS (pwMS) and find better ways to measure changes in these functions such that they can become outcomes in clinical trials. This could provide a pathway to better treatments for pwMS who cannot walk.The campaign used various methods, including surveys, social media posts, exhibitions and music to involve pwMS, healthcare professionals, charities, and researchers in discussions about the issues. Working together, they created tools to support pwMS, particularly those at an advanced stage of the disease (pwAMS), to take part in research and measure their hand and arm function. Through our collaborative approach focusing on patients’ perspectives, the campaign challenged old ideas and deeply embedded practices. It showed that collaboration between different areas of expertise involving pwMS at all stages of research can help solve complex problems. This campaign teaches us valuable lessons for health research. When researchers listen to patients and try new things, they can better understand how a disease affects people’s lives and develop better solutions.In conclusion, we show how embracing a patient-centred approach can address complex research challenges and improve how we study and manage MS and other conditions in the future.