ArticleResearch involvement and engagement2025
Enhancing patients' role in scientific writing: insights from a global participatory approach with people with multiple sclerosis.
Article in Research involvement and engagement, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.
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Who cites it
4 citing papers in PubMed.
- What we know, don't know, and need to know about patient authorship: a scoping review, evidence gap analysis, and research roadmap.Research involvement and engagement · 2026Article
- Every VoiceCAN: the journey and contributions of a grassroots regional cancer advisory network.Research involvement and engagement · 2026Article
- Questions for more insightful and useful analyses of barriers and facilitators to public involvement and engagement in health research: a critical narrative review.Research involvement and engagement · 2026Review
- Navigating uncertainty together: a participatory mixed-method study of counseling services for couples living with multiple sclerosis.Frontiers in public health · 2026Observational
Corrections and comments
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Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionThis study aims to describe a participatory process by investigating the perceptions and expectations of people with multiple sclerosis (pwMS) toward the scientific writing (SW) process and the role of patient engagement and quality of life in influencing them.
methodsA two-phase, multi-methods study was conducted inspired by the MULTI-ACT model. Four co-creation workshops were organized, and the results were used to design a survey, which was translated into eight languages and distributed internationally to 1120 patients. The results from the workshops and the survey were collaboratively used to develop a model for engaging patients in SW.
resultsParticipants expressed a willingness to share their unique experiences of the disease, contribute ideas and words to the project, and engage in research-related problem-solving. The main barriers to patient engagement in SW were identified as physical, psychological, and technical. The survey sample consisted of pwMS primarily from Italy (28.5%), was predominantly female (73.7%), with a mean age of 50.3 years and an average MS diagnosis duration of 13.5 years. Among the participants, 45% had never participated in research initiatives, 89% had never been an author of a scientific publication, and 51% expressed interest in future participation.
conclusionPatients' disease awareness and their perception of quality of life may influence their predisposition towards research and SW. Patient co-authors clearly articulated their perspectives on the essential factors required for contributing to the publication process. A more sensitive approach should be adopted in order to take into account the psychosocial conditions of people with multiple sclerosis and what may hinder their participation in research and in writing scientific publications in order to really guarantee equal access to all.
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