MS in the 21st Century, an initiative sponsored by Merck KGaA, Darmstadt, Germany, involving healthcare professionals (HCPs) and patients, have published their new manuscript ‘Unmet needs, burden of treatment, and patient engagement in multiple sclerosis: a combined perspective from the MS in the 21st Century Steering Group’ in the peer reviewed journal, Multiple Sclerosis and Related Disorders (MSARD).
The paper was developed jointly by clinical and patient experts to discuss how the different perspectives of people with MS and their healthcare providers may have an effect on MS and its treatment burden. One of the authors, Professor Gavin Giovannoni, Chair of Neurology, Blizard Institute of Neurology, Barts and The London School of Medicine and Dentistry, explains:
This manuscript is distinct in the field as it is co-authored by healthcare professionals and people with the disease. This does not only represent the ‘patient voice’ but rather gives equal importance to the patient and HCP perspective. Most importantly, it recognises the need to start from a place of mutual understanding of each other’s priorities. I anticipate that the group’s recommendations on unmet needs and treatment burden will help to pave the way for more collaborative and holistic MS care.
Despite the large number of advances in the field of MS over the last 20 years, a cure remains elusive, and unmet patient needs that affect quality of life continue to exist. The limited opportunities for collaboration between healthcare professionals and patients to share priorities and drive patient-centred solutions is reflected by the lack of jointly-produced papers available on the issues. Birgit Bauer, a person with MS, believes that is why the impact of this paper will be huge:
As a person with MS, I cannot overstate the significance of this publication. Just as the authors of the paper have done, I am hopeful patients everywhere and their healthcare teams will recognise the need for better communication and partnership with the ultimate goal of more effective and personalised care.
The aim of the paper is to highlight the varying priorities between healthcare professionals and patients, whilst the practical recommendations documented will bridge the gaps in perception and enable better collaboration, ultimately improving patient care. Professor of psychology, Dawn Langdon, said:
The publication of this paper is a key step towards ensuring that MS care addresses patient expectations, priorities and needs, and it is vital that we work together to enhance shared decision-making and therefore increase patient engagement.
‘Unmet needs, burden of treatment, and patient engagement in multiple sclerosis: a combined perspective from the MS in the 21st Century Steering Group’ is published in the peer reviewed journal, Multiple Sclerosis and Related Disorders (MSARD), and is available online now at: https://doi.org/10.1016/j.msard.2017.11.013
About MS in the 21st Century
An initiative of Merck established in 2011, the members of the steering group include: 14 HCPs (including neurologists, a neuropsychologist, a health economist, an MS nurse, an MS rehabilitation specialist) as well as 11 people with MS (PwMS) and patient advocacy group representatives.
The group meets regularly to discuss the creation of programmes and awareness to achieve the following objectives:
- improve communication between patients and HCPs through joint education and interaction
- improve awareness of, and access to, treatment and care
- improve provision/access to information by: ensuring high-quality information from credible sources, increasing public awareness of MS, and focusing on e-medicine and e-education
- promote patient activation and self-management by: highlighting the significance and benefits of self-management, empowering patients through education and communication, and improving the social well-being and integration of MS patients.
