Enhancing patients’ role in scientific writing: insights from a global participatory approach with people with multiple sclerosis
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.
Authors
- Vanessa Fanning (ORCID: https://orcid.org/0000-0001-9211-4256)
- Dilara Usta (ORCID: https://orcid.org/0000-0003-1300-0678)
- Federica Molinari
- Mariarosaria Savarese (ORCID: https://orcid.org/0000-0003-0809-100X)
- Guendalina Graffigna (ORCID: https://orcid.org/0000-0003-4378-7467)
- Paola Zaratin (ORCID: https://orcid.org/0000-0001-8935-4670)
- Federico Bozzoli
Institutions
- Università Cattolica del Sacro Cuore (IT)
- Health Alliance International (US)
- Associazione Italiana Sclerosi Multipla (IT)
- University of the Sacred Heart (JP)
Publication Details
- Journal
- Research Involvement and Engagement
- Published
- 2025-02-24
- DOI
- https://doi.org/10.1186/s40900-025-00687-2
- Primary Topic
- Mental Health and Patient Involvement
- Type
- article
- Field-Weighted Citation Impact
- 0.00