SIG Patient Empowerment

The Special Interest Group (SIG) Patient Empowerment is dedicated to strengthening the role of people with Multiple Sclerosis (PwMS) as informed, active and confident partners in their care journey. Our work focuses on shared decision-making (SDM), evidence-based patient information (EBPI), self-management support, and the broader behavioural and social factors that influence health outcomes in MS.

In line with the World Health Organization perspective, patient empowerment is understood as “a process in which patients understand their role, are given the knowledge and skills by their health-care provider to perform a task in an environment that recognizes community and cultural differences and encourages patient participation” [Patient empowerment and health care. Available from: https://www.ncbi.nlm.nih.gov/books/NBK144022/].

Based on internal discussions and feedback collected during the SIG meeting at the RiMS Congress 2024, the group decided to reframe its original identity from “Patient Autonomy” to “Patient Empowerment”. While autonomy remains a key concept, “Patient Empowerment” adopts a broader perspective that also includes health behaviour change, educational approaches, and the social determinants of health. This shift reflects the need to support PwMS not only in making informed choices, but also in navigating lifestyle challenges, social inequalities, and structural barriers to care. 

Across all domains, the SIG Patient Empowerment pursues two main aims. First, to describe the current state of patient empowerment, health behaviours and social inequalities through high-quality qualitative and quantitative research in PwMS, ideally in a transnational context. Second, to develop practical and easily implementable interventions, with a strong focus on web-based tools that can be widely accessible across different healthcare systems.

In the area of empowerment, the SIG continues to work on evidence-based health information and decision-support tools. Current and future topics include bladder management education, motherhood and family planning, and immunotherapy decision-making. The group also supports resilience-oriented interventions, such as Acceptance and Commitment Therapy, in collaboration with members of the SIG Mood & Cognition.

Health behaviours represent another core focus. The SIG promotes evidence-based information on the benefits and risks of behaviours such as smoking, physical activity, nutrition, stress management, and treatment adherence. Beyond information provision, the group highlights practical strategies that help PwMS initiate and maintain health behaviours in daily life.

The SIG Patient Empowerment also addresses the social determinants of health in MS. Research activities explore how factors such as lower levels of education, financial stress, limited social support, migration background, language barriers and cultural differences influence access to care and health outcomes. Particular attention is given to the needs of marginalised and underserved groups within the MS community.

At the same time, the SIG is actively reaching out to professionals interested in becoming core members of this newly framed group, intending to expand its international and interdisciplinary network.