A Global Multilingual Co-Creation of Aphasia Topics Priorities through Patient and Public Involvement

Background : People living with chronic aphasia (PWA) face long-term challenges that go well beyond communication difficulties, including emotional, social, and societal barriers. To ensure that research and policy efforts address what matters to them, it is vital to directly involve PWA in setting priorities. This international initiative adopted Patient and Public Involvement (PPI) approach to co-create a research agenda with individuals living with chronic aphasia and health professionals across countries and languages. Aim : The study, initiated by a person with aphasia and three laypersons, aimed to collaboratively identify and prioritize research topics of greatest importance to PWA through a multilingual PPI process. Methods : Using the PAOLI (People with Aphasia and Other Layperson Involvement) framework and inclusive communication strategies, the project engaged more than 100 participants from 13 countries, with 11 countries contributing to voting. The three-phase process included: (1) online consultations to generate initial topics, (2) national-level codesign sessions to refine and rank topics, and (3) international voting with multilingual dissemination. Aphasia-friendly materials and real-time translation ensured accessibility. Results : PWA played key roles in proposing topics, organizing summarizing national and international voting and promoting dissemination. Eleven out of the thirteen participating countries (83%) voted. PWA Co-authors rated their influence as optimal (5/8) or good (3/8), with a mean rating of 3.6/4. Notably, 11 of 12 proposed topics originated from PWA. Four priorities emerged: (1) raising awareness of aphasia among families and society, (2) psychological changes, including impacts on intimacy and relationships, (3) rebuilding self-confidence after aphasia, and (4) improving therapy and hospital attitudes toward treatment. Conclusion : This multilingual, PPI-led initiative shows that PWA can meaningfully co-create thematic priorities when supported with inclusive, accessible methods. The priorities – chosen by people living with long term aphasia - confirm and extend findings from previous studies, especially the urgent need to increase awareness of aphasia in society. These outcomes highlight a holistic view of living with aphasia, emphasizing social, emotional, and communicative dimensions that should shape future research, clinical care, and policy.