MSer – A new, neutral descriptor for someone with multiple sclerosis

Baker, David; Pepper, George; Yauner, Freddie; Giovannoni, Gavin

doi:10.1016/j.msard.2013.06.010

Cited by 6 publications

(2 citation statements)

References 3 publications

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“…The MS Research group at QMUL has a long-standing PPI group and a track record of engaging people at all stages of research development [18][19][20][21]. Clinical academics and researchers within the group successfully use a range of social media platforms within their PPI and engagement work, which became crucial in this campaign.…”

Section: Role Of Patient Engagementmentioning

confidence: 99%

Engaging a community to focus on upper limb function in people with multiple sclerosis: the ThinkHand campaign case study

Thomson,

Horne,

Chapman

et al. 2024

Res Involv Engagem

Self Cite

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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.

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Section: Role Of Patient Engagementmentioning

confidence: 99%

Engaging a community to focus on upper limb function in people with multiple sclerosis: the ThinkHand campaign case study

Thomson,

Horne,

Chapman

et al. 2024

Res Involv Engagem

Self Cite

View full text Add to dashboard Cite

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“…Person with MS was preferred by 42% of respondents. 3 It is possible that the MS blog attracted participants with a stronger disability identity than people with MS surveyed more broadly or may simply represent a biased sample, given recruitment was via people interacting with the blog. Some disability advocates prefer use of identity-first language to assert that there is no shame in disability.…”

Section: Person-first Versus Identity-first Languagementioning

confidence: 99%

Addressing me in the context of my disease: Why it is so complicated

Grech

2022

Mult Scler

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Addressing a person in the context of their disease must be done respectfully. As a person with multiple sclerosis (MS), my preference is to be referred to as such. Some people with MS refer to themselves as MSers, MS warriors, MS sufferers, and that’s fine. A person with MS can refer to themselves in the context of their disease in the manner they choose. People without MS should use terminology most respectful and acceptable to the broadest of the minority. Academics sometimes use persons with MS to refer to an infinite number of people. Not only is this incorrect but use of persons has broadly fallen out of favour in recent decades. In this personal viewpoint I discuss these issues from a lived experience perspective.

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Neurology and the Internet: a review

Moccia

Brigo

Tedeschi³

et al. 2018

Neurol Sci

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Nowadays, the Internet is the major source to obtain information about diseases and their treatments. The Internet is gaining relevance in the neurological setting, considering the possibility of timely social interaction, contributing to general public awareness on otherwise less-well-known neurological conditions, promoting health equity and improving the health-related coping. Neurological patients can easily find several online opportunities for peer interactions and learning. On the other hand, neurologist can analyze user-generated data to better understand patient needs and to run epidemiological studies. Indeed, analyses of queries from Internet search engines on certain neurological diseases have shown a strict temporal and spatial correlation with the "real world." In this narrative review, we will discuss how the Internet is radically affecting the healthcare of people with neurological disorders and, most importantly, is shifting the paradigm of care from the hands of those who deliver care, into the hands of those who receive it. Besides, we will review possible limitations, such as safety concerns, financial issues, and the need for easy-to-access platforms.

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MSer – A new, neutral descriptor for someone with multiple sclerosis

Cited by 6 publications

References 3 publications

Engaging a community to focus on upper limb function in people with multiple sclerosis: the ThinkHand campaign case study

Engaging a community to focus on upper limb function in people with multiple sclerosis: the ThinkHand campaign case study

Addressing me in the context of my disease: Why it is so complicated

Neurology and the Internet: a review

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