Enhancing patients’ role in scientific writing: insights from a global participatory approach with people with multiple sclerosis

Abstract

Abstract Introduction This 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. Methods A 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. Results Participants 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. Conclusion Patients’ 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.

Keywords

• Authorship
• Multiple sclerosis
• Participatory governance
• Patient author
• Patient engagement
• Responsible research innovation