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Manuscripts

Knowledge Is Power, but Is Ignorance Bliss? Optimising Conversations About Disease Progression in Multiple Sclerosis

Neurol Ther. 2019 Nov 20

This paper, published in November 2019, summarizes the group's debate held at the European Charcot Foundation Annual Meeting in 2018. During this session, the panel discussed the benefits of discussing MS progression, but also the stigma and challenges associated with communicating this complex and uncertain disease course.

Joint Healthcare Professional and Patient Development of Communication Tools to Improve the Standard of MS Care

Adv Ther. 2019

This paper builds on insights that the group previously published in their 2018 paper ‘Unmet needs, burden of treatment, and patient engagement in multiple sclerosis’. The new paper describes how a unique collaborative development process utilising the insights from that publication along with the groups’ original research, led to the creation of two communication tools, myMS priorities and myMS commitments.

Patient Power Revolution in Multiple Sclerosis: Navigating the New Frontier

Neurol Ther. 2O18 Nov;7:179

This article, published in November 2O18, summarises a debate between patient and HCP members of the MS21 steering group held at the European Charcot Foundation Conference in November 2O17. During the debate, our panel discussed the risks and benefits of patient engagement and shared decision-making in MS care. This publication is MS21’s first manuscript with a patient lead author.

Unmet needs, burden of treatment, and patient engagement in multiple sclerosis: A combined perspective from the MS in the 21st Century Steering Group

Mult Scler Relat Disord. 2O18 Jan;19:153-6O.

Since 2O16, MS21 has had a unique position as a joint patient and healthcare professional steering group. Having identified differences between the opinions of the two groups on the greatest unmet needs in MS care, this paper sets out to provide practical actions on how communication can be improved, and gaps in MS care can be addressed through collaborative projects. This is MS21's first paper co-authored by both the HCP and patient members of the group.

Achieving patient engagement in multiple sclerosis: A perspective from the multiple sclerosis in the 21st Century Steering Group

Mult Scler Relat Disord. 2O15 May;4(3):2O2-18.

For our second published paper, the MS in the 21st Century Steering Group members researched examples of how best to motivate patients to get involved in their care (patient engagement strategies) and examined ways in which this has worked well in other chronic disease areas. After workshop discussions, the group decided to publish their views on how to achieve patient engagement, and suggest practical ways to overcome any barriers to patient involvement.

Future MS care: a consensus statement of the MS in the 21st Century Steering Group

J Neurol. 2O13 Feb;26O(2):462-9.

The first article published by MS in the 21st Century in 2O13 was a public statement outlining what the group believed MS care should look like in the future. The publication was created after three phases of discussions, during which the steering group envisaged that MS care should include full access to personalised treatment, with reimbursement, to achieve freedom from disease.

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MS in the 21^st Century is proud to base all of its work on original data and insights collected from real people in the worldwide MS community.

If you are a person with MS, a healthcare professional involved in MS care, or a caregiver or family member, please take one of our surveys to help shape future MS in the 21^st Century programs.

Take our survey

Get involved

MS in the 21^st Century is proud to base all of its work on original data and insights collected from real people in the worldwide MS community.

If you are a person with MS, a healthcare professional involved in MS care, or a caregiver or family member, please take one of our surveys to help shape future MS in the 21^st Century programs.

Our MS resources:

Explore MS21's communication toolsand publications below

Manuscripts

Get involved

Get involved

US-NONNI-00565 April 2021

Explore MS21's communication tools
and publications below