How to start a blog

Thomson, Alison; Raciborska, Dominika; Baker, David; Giovannoni, Gavin

doi:10.1136/practneurol-2017-001597

Cited by 3 publications

(2 citation statements)

References 1 publication

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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

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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

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“…Kedua-dua elemen ini mampu untuk memberikan kesan dari segi fisiologi dan psikologi kepada khalayak sasaran. Selain itu Thomson et al (2017) menyatakan bahawa penggunaan perkataan yang ringkas, jelas dan bebas dari frasa-frasa atau jargon yang susah untuk difahami amatlah penting sewaktu berkomunikasi di media sosial. Penggunaan gaya bahasa seperti perbualan seharian turut membolehkan mesej yang cuba disampaikan lebih mudah.…”

Section: Media Dan Kesedaran Alam Sekitarunclassified

Duta River of Life: Analisis Kandungan Twitter Selebriti Maya Karin

Huzaidi

Hasan

2022

MJSSH

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Keberkesanan penggunaan media massa seperti Twitter dapat mewujudkan kesedaran penjagaan sungai dalam kalangan pengikut selebriti mahupun duta sesuatu kempen mengenainya. Kajian ini dijalankan secara analisis kandungan terhadap kicau serta kicau semula yang dibuat oleh Maya Karin di Twitter dari Januari hingga 31 Julau 2019 mengenai kesedaran penjagaan sungai. Faktor-faktor kajian ini dijalankan untuk menganalisis pendekatan Maya Karin menggunakan Twitter bagi menyampaikan kesedaran penjagaan sungai, mengkaji corak kicau semula (retweet) oleh Maya Karin dan menganalisis frekuensi komen, kicau semula serta kesukaan pengikut Maya Karin tentang penjagaan sungai. Kajian ini telah membuktikan bahawa penggunaan Twitter yang efektif mampu memberi kesan dan kesedaran terhadap isu penjagaan sungai khususnya dalam kalangan pengikut. Selain itu, penggunaan Teori Komunikasi Dialogik telah membuktikan penggunaan Twitter adalah medium komunikasi interpersonal yang berkesan serta mendatangkan keuntungan pada yang saling berinteraksi.

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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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How to start a blog

Cited by 3 publications

References 1 publication

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

Duta River of Life: Analisis Kandungan Twitter Selebriti Maya Karin

Neurology and the Internet: a review

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