A global multilingual cocreation of aphasia priority topics through patient and public involvement

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 the patient and public involvement (PPI) approach to co-create a research agenda with PWA and health professionals across countries and languages.

This study was initiated by a person with aphasia and three laypersons. We aimed to i) collaboratively identify and prioritize topics of greatest importance to PWA through a multilingual PPI process for orienting future research and ii) evaluate the participation and adherence of strongly involved PWA (both Patient Authors (PAs), and PWA who participated in co-design sessions)

The project involved more than 100 people living with aphasia (PWA) from 14 countries, with 11 countries contributing to the voting process. It utilised the PAOLI (People with Aphasia and Other Layperson Involvement) framework and inclusive communication strategies. The three-phase process included (1) an online consultation phase to generate initial topics, (2) a development phase through national-level co-design sessions to refine and rank topics and that concluded with international voting of four top priorities, and (3) a multilingual translational phase. Aphasia-friendly materials and real-time translation ensured accessibility.

PWA played key roles in proposing topics, organizing and summarizing national and international voting, and promoting dissemination. Eleven out of the 14 participating countries (78%) voted. PAs rated their influence as optimal (5/8) or good (3/8), with a mean rating of 3.6/4. Notably, 11 of the 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 towards treatment.

This multilingual, PPI-led initiative demonstrates that PWA can meaningfully co-create thematic priorities when supported by inclusive, accessible methods. These priorities, selected by PWA, corroborate and expand upon the conclusions of earlier research, particularly the pressing necessity to enhance public awareness of aphasia. The results also underscore a comprehensive perspective on living with aphasia, emphasising the social, emotional, and communicative dimensions that should guide future research, clinical care, and policy.