Mult Scler Relat Disord. 2018 Jan;19:153-60.
Since 2016, the group has had a unique position as a joint patient and healthcare professional steering group. Having identfiied 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 patient and healthcare professional projects.
Mult Scler Relat Disord. 2015 May;4(3):202-18.
For their 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.
J Neurol. 2013 Feb;260(2):462-9.
The first article published by MS in the 21st Century in 2013 was a public statement on what they think 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.
MS in the 21st Century is also proud to have published 7 original posters to date at international scientific congresses, with a number of them having been nominated for, or received, awards. The posters listed below include data generated by the group on perceptions of unmet needs in MS and international distribution of educational resources for MS patients.
- Rieckmann P et al. (2017) MS in the 21st Century Mapping Study to Quantify the Educational Offerings for Patients from Multiple Stakeholders in the Field of Multiple Sclerosis in Europe and Canada [Poster IS05] Presented at CMSC, New Orleans, USA
- Rieckmann P et al. (2017) Comparing patient and healthcare professional perceptions on multiple sclerosis management and care – where do their priorities differ? Results from a qualitative survey. Presented at ECTRIMS, Paris, France
- Rieckmann P et al. (2017) A mapping study to compare the educational offerings for patients in the fields of multiple sclerosis and HIV in Europe and Canada. Presented at ECTRIMS, Paris, France
- Morrow SA et al. (2018) A mapping study comparing educational resources for multiple sclerosis patients across the USA, Latin America, Middle East and Asia-Pacific regions [Poster IS02] Presented at CMSC, Nashville, USA
- Oreja-Guevara C et al. (2018) Patient involvement in treatment decision-making: a sub-analysis of the ‘MS in the 21st Century international unmet needs survey’ comparing patient and healthcare professional perspectives. Presented at EAN, Lisbon, Portugal
- Schippling S et al. (2018) MS in the 21st Century mapping study identifying the global educational offerings for multiple sclerosis patients. Presented at ECTRIMS, Berlin, Germany
Dealing with a diagnosis of MS; are patients well prepared?
What resources do patients find helpful to support them?
Since 2016, we have been particularly active representing at congresses all across the world. The videos below are from our symposium held at CMSC in 2017.