This survey – created by people with MS, for people with MS – will collect valuable data about what really matters most for people with MS across the world.
Once analysed, we don’t just want the data to be published in a scientific paper (although that is important too) – we want it to be used.
Initially, results from this survey will feed into a prioritisation study (a ‘Delphi’ exercise) to come up with a shortlist of the functional domains that are most important to people across the world. This shortlist will then feed into many more research studies, recommendations for patient care, and policy-making.
Some of the impacts we expect to arise from the results of this survey include:
- Validating patient perspectives: by showing that what people with MS experience is important to them and deserves attention from researchers, healthcare professionals, and policy decision-makers.
- Holistic care: encouraging a focus not only on DMTs, but also on other vital aspects of patients’ lives, like managing fluctuating symptoms, mental health, and overall well-being.
- Health apps and technology: recommendations for what type of information apps and tools that help people manage their MS should be collecting. These tools can be designed to make it easier for people to help manage their own health, and share their experiences with their healthcare professionals.
- Better communication: by understanding what’s most important to patients, healthcare professionals can improve their communication and collaboration with those affected by MS. This fosters a sense of partnership in care, where patients’ voices and concerns are respected and taken seriously.