Finalist
MS in the 21st Century: ‘myMS’ Tools to Empower Patients in Shared-Care Decisions
Summary of work
'MS in the 21st Century' began as neurologist-led initiative in 2011, sponsored by Merck, aimed at tackling unmet needs in MS. In 2015, patients were added and together they generated data around these unmet needs to develop resources for both communities. The fundamental premise of their partnership is that better communication and aligned priorities are essential to empowering patients to realise truly shared care – two monologues do not make a dialogue.
After gathering evidence around the need for improved communication between people with MS (PwMS) and HCPs through literature reviews, qualitative interviews and community-based surveys, they developed communication tools for patients and their care teams. The 'myMS toolkit' comprises four tools that have been shared across a diverse range of media and stakeholders. Supported by a learning programme, they are used globally and integrated into individual practice, patient association and community programmes, clinical workshops and university courses.
Alongside their HCP partners, patients are key to the ideation, creation and delivery. The longer-term goal is to measure impact on shared decision-making in a controlled trial. In the meantime, the uptake and distribution metrics, alongside a number of awards, show myMS tools are addressing a key unmet need in MS.
Judges’ comments
Elements of this entry resonated with the judges and there were valuable insights made in many places. The entry was a solid example of centring the patient and caregiver(s) at the heart of decision-making in what is a complex area of meeting care needs.
