Vermersch Patrick, Faller Andreas, Czarnota-Szałkowska Dominika, Meesen Bianca, Thalheim Christoph
University of Lille, CHRU de Lille, Lille International Research Inflammation Center (LIRIC), INSRRM U995, FHU Imminent, Lille, France
Attorney and Health Advisor, Basel, Switzerland.
Mult Scler. 2016 Aug;22(2 Suppl):9-17. doi: 10.1177/1352458516650742.
There is currently no known cure for multiple sclerosis (MS). Four stakeholders play a major role in MS: healthcare professionals, regulators, payers and patients.
In Europe, patients are represented by the European Multiple Sclerosis Platform (EMSP), which aims to improve MS management and patients' quality of life.
The EMSP has recently shown that there are major disparities in Europe in terms of access to care and treatment. Implementing the Code of Good Practice and a standardised MS nurse training may be useful in harmonising MS management across Europe. Additionally, the burden for novel therapeutic options to be approved by regulatory agencies has to decrease in order to provide faster access of treatment to patients. Data collection (e.g. national registers) also appears crucial to help research and shape the most effective policy in each country. Finally, people with MS should get appropriate (financial) support in order to complete their studies and find a job, as their active participation in society requires proper access to education and employment. Moreover, as they are the ones affected by MS, they seem to be best placed to represent themselves and their needs and should be consulted more often during decision-making processes by policy makers, regulators and payers.
目前尚无已知的多发性硬化症（MS）治愈方法。在MS领域，有四个利益相关者发挥着主要作用：医疗保健专业人员、监管机构、支付方和患者。
在欧洲，患者由欧洲多发性硬化症平台（EMSP）代表，其旨在改善MS的管理和患者的生活质量。
EMSP最近表明，欧洲在获得护理和治疗方面存在重大差异。实施良好实践准则和标准化的MS护士培训可能有助于在欧洲范围内协调MS的管理。此外，监管机构批准新治疗选择的负担必须减轻，以便患者更快获得治疗。数据收集（如国家登记册）对于帮助研究和制定每个国家最有效的政策似乎也至关重要。最后，MS患者应获得适当的（经济）支持，以便完成学业并找到工作，因为他们积极参与社会需要有适当的教育和就业机会。此外，由于他们是受MS影响的人，他们似乎最有资格代表自己和自己的需求，政策制定者、监管机构和支付方在决策过程中应更频繁地征求他们的意见。
