New Study Supported by International Progressive MS Alliance Emphasizes Patient Engagement in Scientific Research from Study Design to Publication
A new study titled, “Enhancing Patients' Role in Scientific Writing: Insights from a Global Participatory Approach with People with Multiple Sclerosis,” published in the journal Research Involvement and Engagement highlights the value of involving people with multiple sclerosis (MS) in scientific research throughout the process, including becoming co-authors of the resulting scientific publications.
The study was coordinated by Associazone Italiana Sclerosi Multipla (AISM) and its Foundation (FISM) in collaboration with the International Progressive MS Alliance and the EngageMind Hub at Università Cattolica del Sacro Cuore, Milan. Inspired by the MULTI-ACT model, the two-phase, multi-method study involved people with MS from various countries and researchers. The aim was to identify the barriers and opportunities for people living with MS to participate in research in order to increase overall impact. The results of four co-creation workshops were used to design the survey, which was translated into eight languages and distributed internationally to 1,120 patients worldwide.
Two members of the International Progressive MS Alliance’s People Affected by MS Engagement Coordination Team participated in the development of the study and co-authored the paper: Vanessa Fanning, who lives in Australia, and Federico Bozzoli from Italy. They share, “Involving people with lived experience in finding solutions for MS is critically important. It ensures our voices and experiences are valued, and that research is focused on solving the problems we need to have solved.”
The study found several barriers that discourage patient involvement in research and scientific writing, which were categorized as physical, psychological and technical. In addition, the study found that systemic barriers discouraged patient engagement in research and scientific writing, including a requirement for fluency in English, challenges arising from cultural diversity, a lack of confidence in using scientific terminology, and the rigid formats of traditional research and publishing. In addition, poor communication between scientists and patients, as well as a perceived lack of inclusivity, were also found to hinder participation.
Paola Zaratin, Director of Scientific Research at FISM, and Federica Molinari, Patient Engagement Manager, also co-authors of the study, added, "This study represents a fundamental step in recognizing the key role of people with MS not just as research participants, but also as authors of scientific publications. Only in this way can research become more inclusive and truly representative of the needs and experiences of people with MS."
Guendalina Graffigna, professor at Università Cattolica del Sacro Cuore, together with researcher Mariarosaria Savarese and research fellow Dilara Usta, co-authors of the study, said, “Among the main challenges identified in the study are chronic fatigue, compromised mental well-being, and physical isolation, all of which hinder patients’ participation in research activities. To overcome these barriers, a scientific approach is needed to engage individuals based on their preferences and abilities."
In conclusion, the paper recommends several measures to promote inclusivity. These include setting clear communication goals, providing support to overcome language barriers, and creating a support network to address individual patient needs. The paper also calls for increased flexibility and collaboration in institutional, funding, regulatory, and publishing formats, such as the inclusion of a dedicated patient engagement plan in scientific writing in the research proposal, as well as resources allocated to provide patients with specific training and tools that reduce systemic barriers.
Other systemic changes are also needed to make patient engagement more meaningful, accessible, and effective, fostering a respectful two-way dialogue between scientists and patients. Within this framework, the Alliance Principles of Patient Engagement in Research represents a step toward meeting the challenge.
The International Progressive MS Alliance is an unprecedented global collaboration of MS organizations, including MS Canada, researchers, health professionals, pharmaceutical companies, foundations, donors and people affected by progressive MS – all working together to accelerate the development of life-changing treatments for people with progressive MS. Our promise is more than hope – it is progress.