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MSVirtual2020: How MSers use social media to search for info

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  • MSVirtual2020: How MSers use social media to search for info

    P0662 - How patients utilize online data sources to engage with the Multiple Sclerosis (MS) community and search for information on their condition (ID 321)

    J. White S. Teoh S. Gabriele J. Vindici

    Presentation Number
    Presentation Topic
    Internet and Social Media


    The internet and social media have become an increasingly accessible source of information for MS patients; allowing them to not only expand their knowledge of MS but also connect with fellow sufferers and hence feel part of a community.

    To assess how use of online information and social media impacts patients’ MS management, in the 5EU (UK/Germany/France/Italy/Spain) and the United States (US).

    The Ipsos MS syndicated Patient Community gathered qualitative patient perceptions via an online community platform; collected via a PC, tablet or app in the 5EU (UK/ Germany/ France/ Italy/ Spain) and US in 9/2019. Patients were recruited from a specific MS patient panel and were taking a range of disease-modifying treatments (DMTs) of varying treatment status and MS types.

    229 MS patients participated in the MS syndicated Patient Community (n=178/51 5EU/US). Patients typically use official MS specific websites to search for facts seeing these as credible sources whilst Facebook groups are the main social media platform used to engage with other patients, gain first-hand experiences and share support. Patients typically research only at key milestones in their journey; primarily when they are waiting for a diagnosis, when first starting or switching DMT or when suffering from a significant symptom or relapse. Additionally, patients are more likely to research if they feel listened to by their Healthcare Professionals (HCPs) as being able to discuss their online findings provides an incentive to be proactive in their MS management. Patient awareness of the European/Americas Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS/ACTRIMS) is low; 63.1% of patients have never heard of ECTRIMS/ACTRIMS and many are not aware of key topics and new developments presented, although most have a strong interest to learn.

    Patients are less proactive in researching about MS if they feel they are stable on treatment or if there is little HCP engagement to discuss what they have read online. The low awareness of ECTRIMS/ACTRIMS suggests that HCPs are not sharing what they have learned as well there being a lack of patient-friendly conference news. Whilst there is a lot of focus on both pharma and HCPs having a patient-centric approach, additional investigation is needed to identify how to promote an active patient researcher mindset thereby empowering patients to take charge of their MS management.
    Dave Bexfield