SIG Patient Autonomy
Empowering informed decisions, shared care, and autonomy in Multiple Sclerosis
SIG Patient Autonomy
About us
The Special Interest Group (SIG) Patient Autonomy is dedicated to enhancing the role of people with Multiple Sclerosis (PwMS) in making informed decisions about their health. Our work centers around shared decision-making (SDM), evidence-based patient information (EBPI), and supporting self-management strategies.
By fostering international collaboration and promoting tools to support patient autonomy, we aim to ensure that individuals with MS are not only informed but empowered participants in their care journey.
-
➜ Who participates
The SIG brings together professionals involved in Multiple Sclerosis rehabilitation, including clinicians, researchers, and educators, who are committed to enhancing patient-centered care. The group works collaboratively to design, test and share effective decision-support tools across cultural contexts.
-
➜ How it started
The group emerged from collaborations during the 14th RiMS Conference in 2009, initially focused on evidence-based patient education. Over time, the name evolved to “Patient Autonomy” to better reflect a proactive and empowerment-focused approach. The SIG builds on earlier European projects and publications from the MARCH programme, with a vision aligned to the RIMS mission of fostering autonomy and participation in PwMS.
-
➜ Our goals
• Develop and evaluate evidence-based patient decision aids
• Promote and support shared decision-making (SDM) strategies
• Design and validate patient-reported outcome measures
• Assess treatment adherence and its influencing factors
• Collaborate on educational interventions and research projects
• Foster tools that support cultural adaptation and risk knowledge
• Provide methodological guidance for complex interventions
Meetings & Reports
The SIG Patient Autonomy keeps its network engaged through dedicated annual meetings and collaborative working sessions, where members discuss ongoing studies, explore new intervention ideas, and plan multi-country projects aimed at strengthening patient autonomy and shared decision-making in MS care. These gatherings also provide a forum for designing and refining practical tools such as decision aids, risk knowledge measures, and SDM training modules.
By combining focused meetings with continuous collaboration across borders and disciplines, the group ensures that evolving research and innovative approaches are shared widely and transformed into meaningful outcomes for people with Multiple Sclerosis.
Members
Antonio Schindler
Frederike Adammek
George George
Juliette Van Zuijlen
Piet Eelen
Sverker Johansson
Stephan Ilsbroux
Alexandra Golewska
Line Berthelsen
Publications
Joint publications of the SIG Patient Autonomy
-
"Decisions on multiple sclerosis immunotherapy: New treatment complexities urge patient engagement. J Neurol Sci 2011;306:192-7."
Heesen C, Solari A, Giordano A, Kasper J, Köpke S.
-
"Autonomy preferences, risk knowledge and decision making performance in ms (AutoMS): the Control Preference Scale. Oral presentation at RIMS 2011 Conference, May 13-14 Turku, Finland."
Solari A, Giordano A, Köpke S, Kasper J, Lugaresi A, Pugliatti M, Van Nunen A, Vahter L, Drulovic J, Clanet M, Sharrack B, Fulcher G, Heesen C, on behalf of the AutoMS-group
-
"Risk knowledge and planned behavior questionnaires – new tools to assess decision-making in MS. Presented as poster at RIMS 2011 Conference, May 13-14 Turku, Finland."
Heesen C, Köpke S, Kasper J, Giordano A, Van Nunen A, Vahter L, Drulovic J, Clanet M, Sharrack B, Fulcher G, Solari A, on behalf of the AutoMS-group.
Take a look at all different publications from SIG Patient Autonomy here.
Interested to join?
Become a member of RiMS and get immediate access to our community. Find more info here: