Setting priorities for how future research in multiple sclerosis in Canada considers equity, diversity and inclusion:...

Area of Science:

• Neurology
• Public Health
• Health Research Methodology

Background:

• Multiple sclerosis (MS) research historically lacks diverse participant representation.
• Addressing inequities in MS research is crucial for comprehensive understanding and treatment.
• Current research paradigms may not adequately capture the experiences of all populations affected by MS.

Purpose of the Study:

• To establish consensus on priorities for enhancing equity, diversity, and inclusion (EDI) in Canadian multiple sclerosis (MS) research.
• To identify actionable strategies for improving EDI within the MS research landscape.
• To guide future research funding and policy decisions in MS.

Main Methods:

• A modified e-Delphi technique was employed, involving three rounds of surveys.
• Participants included individuals with lived experience (people with MS or family members), EDI researchers, and MS clinicians.
• Surveys focused on five domains: diversity measurement, recruitment strategies, and the roles of funders and publishers, alongside training needs.

Main Results:

• Eighty-seven participants completed the initial survey, with high retention rates across subsequent rounds (82 and 81 participants).
• Forty-five consensus-driven items were identified across the five domains, indicating strong agreement on priorities.
• The majority of consensus items were deemed achievable, suggesting practical implementation is feasible.

Conclusions:

• This study successfully identified critical priorities for integrating EDI into Canadian MS research.
• The findings provide a roadmap for researchers, funders, and institutions to foster more inclusive research practices.
• Implementing these priorities can lead to more equitable and effective advancements in multiple sclerosis care and outcomes.