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

A Global Multilingual Co-Creation of Aphasia Topics Priorities through Patient and Public Involvement | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article A Global Multilingual Co-Creation of Aphasia Topics Priorities through Patient and Public Involvement Jean Marie Annoni, Marina Charalambous, Jernej Sluga, Clotilde Marteel, and 9 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-7344409/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 13 You are reading this latest preprint version Abstract 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. aphasia stroke patient and public involvement patient experience topics awareness Figures Figure 1 Figure 2 Figure 3 Plain English summary Aphasia is a condition that makes it hard for someone to speak, understand, read, or write, most often after a stroke. But the impact goes far beyond language. People with aphasia (PWA) often struggle with loneliness, emotional difficulties, and being misunderstood. An international study brought together nearly 100 people living with long-term aphasia and health professionals from 13 countries to find out what really matters to them. Instead of researchers deciding, people with aphasia helped lead the project, a method called Patient and Public Involvement (PPI). The study happened in three steps: first, online meetings gathered ideas; then, small group sessions in each country discussed and ranked them; finally, everyone voted across countries to choose the top priorities. To make sure all could take part, the team used aphasia-friendly materials, live and written translations, and simple communication tools. Despite challenges of working across different languages, participation was high, with most people staying involved throughout. In the end, four key priorities were chosen: Raising awareness - so families, friends, and society understand aphasia better. Emotional challenges - such as changes in relationships and loss of closeness. Rebuilding confidence - after the life-changing effects of aphasia. Improving therapy - especially how hospitals and services support treatment. This study shows that with the right support, people with aphasia can speak up about what matters most. Their voices highlight not just medical needs, but the full picture of living with aphasia, guiding future care, research, and policies worldwide. Introduction In recent decades, the active involvement of individuals with lived experience as coresearchers and decision-makers in health research has gained momentum, particularly through the advancement of Patient and Public Involvement (PPI) methodologies. This paradigm shift is driven by ethical imperatives, democratic values, and the recognition that research is more relevant, effective, and impactful when shaped by those directly affected by the outcomes 1,2 . The 2022 report by the Council for International Organizations of Medical Sciences (CIOMS) further underscored this shift, outlining international guidance on involving patients in all stages of research, from setting priorities to designing studies and disseminating findings 3 . In the field of aphasia, PPI presents both a necessity and a challenge. Aphasia, a communication disorder most often caused by stroke, has historically excluded individuals from research roles because of perceived language and cognitive barriers 4 . However, inclusive research frameworks now demonstrate that people with aphasia (PWA) can meaningfully participate in codesign and coproduction when supported by accessible and adapted methods 4,5 . PPI in aphasia research is especially important for enhancing the relevance of research topics, fostering empowerment, and promoting patient-centred services that reflect real-life needs and experiences 6 . Among chronic neurological conditions, aphasia is uniquely suited for developing and testing inclusive PPI models. Research on how communication, participation, and collaboration are structured is challenging. Involving PWA in priority setting also helps ensure that emerging research agendas address not only clinical or linguistic outcomes but also broader psychosocial and identity-related issues central to quality of life 7,8 . Previous national and international studies have highlighted recurring concerns such as the need to increase public awareness of aphasia, improve psychological support, and enhance the availability of meaningful speech therapy and communication access, integrating international consensus 9–13 . However, number of these works have been national in scope, leaving less attention given to global and multilingual consensus-building led by people with lived experience. Moreover, research on aphasia topics tends to focus on the rehabilitation phase, while improvement of care allows longer chronic survival with ongoing impairments. Among aphasia associations in different countries, with PWA in a chronic and stable condition, both PWA and laypersons were interested in examining how aphasia could impact such identification. The project has been initiated by 3 co-authors: i) JS, a former engineer and co-founder of an Informatics company in Ljubljana, Slovenia, stroke survivor living with aphasia for nearly 30 years and president of the Association Internationale Aphasia (AIA). ii) JMA a neurologist, former vice president of Aphasie Suisse and board member of AIA, iii) SR, a linguistic and advocate of the Fundación Argentina de Afasia "Charlotte Schwarz” in Buenos Aires, and promoter of the Spanish American league (Liga Hispano-Americans de personas con afasia, LIHA), dedicated in raising aphasia awareness in the Spanish-speaking countries. They were helped by MC (speech therapist, member of AIA board, specialized in aphasia rehabilitation and PPI principles) and by stroke survivors with aphasia, active members of AIA, Association Internationale Aphasia ( AIA) is a nonprofit organization founded in 1983 by a Belgian person with lived experience of aphasia. AIA brings together national aphasia-related associations from different countries with the mission of creating stronger links between them, encouraging initiatives to promote aphasia awareness and care, and sharing experiences across various initiatives. A distinctive feature of AIA is that each country has a representative, who is usually a person with aphasia, together with a carer or a healthy family member. The current president is Jernej Sluga (JS), and the vice president is Alexia Kountouri (AK), both stroke survivors living from aphasia. The board also includes three PWA and four laypersons to who support the administrative work (legal, financial, and website-related issues). The contact address is either the person with aphasia or a family member/carer. The Liga Hispano-Americans de personas con afasia (LIHA) also aims to create an alliance of different groups with health professionals specializing in aphasia rehabilitation, people with aphasia, family members and friends, as well as interested people, to raise awareness about aphasia, and help prevent it through better control of risk factors. We initiated a global, multilingual project grounded in the PPI methodology. Through close collaboration with PWA, carers, and allied health professionals in 13 countries, and guided by inclusive strategies such as aphasia-friendly materials and real-time translation, we co-created a set of shared thematic priorities for the aphasia community to guide future research. The aim of this study was to collaboratively identify and prioritize research topics that matter most to PWA through a multilingual, PPI process across diverse cultural and linguistic contexts. The central research question guiding this initiative was as follows: Which aphasia-related research topics are most important and widely shared across countries, as identified by people with aphasia themselves? Methods Ethics The study was conducted online and internationally; it received ethics approval for conduct from the Cyprus Bioethics Committee, institution of the second corresponding author: CNBC EP 2023.01.02. Design This study followed a three-phase longitudinal design, guided by Patient and Public Involvement (PPI) principles and the PAOLI (People with Aphasia and Other Layperson Involvement) framework 4 . The project was conducted by a research team that included people with lived experience of aphasia and aphasia-related expertise (all co-authors of this study). Participants with lived experience were also engaged through National Aphasia Associations across the globe. All phases prioritized accessible communication (visual aids, online translation, reformulation…), linguistic inclusion, and co-decision-making between people with lived experience, carers, and health professionals. The study is reported in accordance with the GRIPP2-LF (Guidance for Reporting Involvement of Patients and the Public – Long Form). See GRIPP-LF in Appendix 1. The project used a structured three-phase process: Consultation meetings: communication-accessible online meetings to generate initial priority topics. National-level co-design meetings: group activities to refine and rank the topics, then an international online voting meeting multilingual processes to select and share the final priorities. Planning international online meeting to promote dissemination of Priorities Topics. Co-researchers with lived experience This project was led by PWA and health professionals affiliated with national aphasia associations, as equal part of the research team. A total of 8 individuals with aphasia and 5 health professionals were involved as co-researchers, contributing to the study design, the thematic development, voting procedures, and writing the manuscript (co-authors with lived experience). These participants played key roles in the research team, organizing the discussion inside their national associations and local aphasia communities, but also exposing the results and their perspectives in the online meetings and deciding how to promote dissemination of the results. In line with recent international standards for characterizing participants in poststroke aphasia research, data were collected on 14 clinical and demographic variables for all participating PWA 14 . This included age, years of education, biological sex, language of treatment/testing, primary language, other languages spoken, history of neurological or cognitive conditions, stroke history, lesion hemisphere, time since onset of aphasia, and comorbidities 14 . Additionally, aphasia severity at the time of participation was documented via the Aphasia Severity Rating Scale (ASRS) from the Boston Diagnostic Aphasia Examination 15 . For health professionals, we recorded their roles in national or international aphasia organizations and any lived or caregiving experience related to aphasia. See Table 1a and 1b for full research team’s (people’ with lived experiences and health professionals) details. Table 1a. Demographic and clinical characteristics of the co-authors with aphasia. PWA MC JS JG RS CL DC HM AK Age (Y) 45 65 NA 59 63 62 52 35 Years of schooling 20 18 19 16 18 19 17 19 Level MA BA MS BA MA MS BA MA Profession Psychologist Engineer Social Worker Engineer Environmental Engineer Architect Teacher Admin Post aphasia RTW No Director Therapist No Charity founder No No Admin/ Role related to aphasia Vice president FNAF President AIA Lead Survivors Groups No President of Say aphasia Board AITA German aphasia Assoc. and AIA Vice president AIA Marital Status Divorced Divorced Married Married Married Married Widowed Single Biological sex (M/F/O) F M M M M M F F Native language French Slovenian Spanish Swiss German English Italian German Greek Actual Language French Slovenian/English Spanish/English Swiss German English Italian English Greek, English Stroke Yes Yes yes Yes Yes Yes Yes Yes Stroke Type H H I I + H I H H H Months post-stroke 270 360 60 72 146 192 120 72 Lesion Side L L L L L R L L Hemiplegia R R No No No L No Yes Aphasia Yes Yes Yes Yes Yes Yes Yes Yes Aphasia Severity 4 3 5 3 5 3 4 4 Note: Note : BA: Bachelor of Arts, MA : Master of Art; MS: Master of Science, FNAF: French Aphasia Association; RTW: Return to Work; AITA: Italian Aphasia Association; AIA aphasia International Association; L: Left; R: Right; I: Ischemic; H; NA; not available; M: Male; F: Female. Table 1b. Health Professionals co-authors demographics Health Professionals JMA MC FE CB SR Age (Y) 68 45 34 57 84 Years of education (YY) 19 22 19 22 19 Education MD PhD MS PhD PHD Profession Medicine Speech therapist Music Therapist Speech Pathology Neurolinguistic Employment Neurology Academic Musical Therapist Academic Academic Role related to aphasia Board Member AIA President Cyprus Stroke Assoc. Board AIA Board Australian Aphasia Assoc. Schwarz Found. for Aphasia Argentina Marital Status Married NA Married Married Widowed Biological sex M F F F F Native language French/Italian Cypriot Hungarian English Spanish Actual Language French, Italian, German, English Cypriote, English Hungaria, English English Spanish, French Note: Note : BA: Bachelor of Arts, MS: Master of Science; AIA aphasia International Association; M: Male; F: Female. Expert with lived experience In addition to the authors, participants in the consultation and voting international meetings were all members from both international aphasia networks: AIA and LIHA. These included PWA, carers, and health professionals (C/HP), with each country represented by 1 to 3 individuals and were part of the expert group. In total 13 aphasia National associations joined the project. Representatives of Bolivia and Uruguay also encouraged the project and participated as observers, given the lack of availability of their aphasia national associations. The distribution of representatives by country for participation in at least one meeting was as follows: United Kingdom: 1–2 PWA, 1 C/HP France: 1–2 PWA Australia: 1 PWA, 1 C/HP Switzerland (French-speaking): 1–2 PWA, 1 C/HP Switzerland (German-speaking): 1 PWA, 1 C/HP Cyprus: 1 PWA, 1 C/HP Hungary: 1 PWA, 1 C/HP USA (Virginia): 1 PWA, 1 C/HP Mexico: 1 PWA, 1 C/HP Slovenia: 1 PWA Estonia: 1 PWA, 1 C/HP Argentina: 1–5 PWA, 2 C/HP India: 1 HP National participants and experts with lived experience Finally, PWA experts and Participants were active members of national aphasia communication groups and with previous experience engaging in group discussions or advocacy work, to take part in the internal national discussions in their respective countries. A total of more than 100 participants living with aphasia from 13 countries took part in at least one phase of the process (see, in table 2; number of PWA participating to the national discussions). Project’s Trajectory PAOLI Phase I – Consultation The consultation phase began in September 2023 and included two 90-minute online meetings with participants from the AIA and LIHA networks. Initially, JS, JMA and SR, with the help of MC (speech therapist specialized in aphasia rehabilitation and PPI principles), contacted AIA members, explaining the project in an aphasia-friendly manner, with the following message: “We would like to invite you to a Zoom meeting with people with aphasia from different countries , as well as a carer or professional (to help with the translation/discussion). During this meeting, we ask you to share 2 - 3 topics that you feel are most important to talk about. Before the Zoom meeting, please talk to your local aphasia and choose a person to represent your country/region at the meeting on September 25 th , 2023 . The meeting will be in English . We will do our best to translate the most important points into French and Spanish ” . Invitations were shared via email, and each session was followed by aphasia-friendly summaries in English, French, and Spanish to support participant understanding and retention. The representative could reflect alone or as a group. The important point is that the proposal should be done by a PWA or a group of PWA. At the first meeting, there was a participation from different PWA and laypersons of 11 countries, and in the second meeting (October 2023) there were 12 PWA and 9 laypersons. Since then and in the following meetings, participants varied, but the following PWA co-researchers, were always present: CM, JG, CL, HM, DC, AK. RS. The participants were asked to prepare one topic that they considered important in living with aphasia. These contributions were used to generate an initial pool of potential priority topics. The meetings, held between September and October 2023, aimed to establish a starting list of at least 12 topics for further discussion. PAOLI Phase II – National development and co-prioritization Between January and May 2024, each country independently developed and refined its list of priorities via codesign methods 16 , tailored to its local context, language, and participant needs. The representative members with aphasia with the laypersons, contacted their aphasia groups, and organised meetings to discuss the different topics then to vote on which are the most important. Different formats were used across countries, including structured in-person focus groups; informal discussions within national associations; and one to three online meetings, depending on accessibility and participant preferences. This flexible and inclusive approach enabled meaningful contributions across diverse levels of aphasia severity and technological access. National teams selected 3–4 top-priority topics based on group consensus. Some countries used an in-person format, (German CH 9 PWA and 2 Laypersons, Mexico 13 PWA and 1 Layperson, French speaking Switzerland 10 PWA and 1 Layperson, and 7 PWA and 1 Layperson Cyprus) which allowed a richer exchange and argumentation with personal experience. Other countries used online meetings to involve more participants (for example, France completed 2 online meetings with 41 French PWA via Zoom in different groups). The development phase culminated in a joint international online session on June 3, 2024, where each country presented its final selections. The group then conducted a comparative analysis to identify the four most consistently prioritized topics across countries. Justification of topic prioritization was also completed by country voting members. PAOLI Phase III – Translation and Dissemination The final phase, from September to October 2024, focused on translating priorities into action and planning dissemination. Specifically, participants with aphasia and laypersons were asked to suggest and propose a dissemination plan. In this phase, PWA from non-English speaking countries found the English-only meetings too difficult and requested that the discussion be held in different languages to make the involvement more meaningful. Six language-specific online meetings (Spanish, English, and French/Italian) were held to refine the four top-ranked topics and co-develop strategies for awareness-raising and knowledge exchange. The participants discussed initiatives such as coordinating an International Aphasia Awareness Day; sharing lived experience testimonies at conferences; promoting multilingual, aphasia-friendly educational campaigns; and encouraging greater inclusion of PWA in organizational decision-making roles. See Figure 1 for the timeline of the three-step co-design process. Translation and Note-Taking Translations were handled primarily by members of the research team: first author JMA translated between French, Italian, German, and English; SR translated between Spanish and French; and CF between Spanish and English. JMA also took meeting notes and prepared AI-generated summaries, which were distributed to participants. Summaries are typically produced in English and translated into French and Spanish, and occasionally into Italian via the DeepL (basic professional version) translation tool. Topic Ranking by Country At the end of the development phase, each participating country was asked to rank up to four priority topics from the original list of twelve. Countries could choose to rank fewer than four topics if preferred. A point-based system was used to weight the responses: 4 points for first, 3 points for second, 2 points for third, and 1 point for fourth. Qualitative and Quantitative Evidence of the Impact of PPI Evaluating the impact of Patient and Public Involvement (PPI) on the whole process, participants, and outcomes is essential in participatory studies 2,17,18 . In this project, the impact was assessed in three ways: Topic generation and adherence: We analysed how many of the initial 12 proposed topics came directly from PWA compared to those suggested by carers or laypersons. We also measured participant adherence at the time of voting. Co-author feedback: A questionnaire was sent to co-authors, asking them to reflect on their perceived role in shaping the results, their sense of being understood, and their understanding of the discussions. Comparison with other studies: In the discussion section, the results of this project are compared with findings from similar studies to contextualize the impact of PPI. Results The results of this study will be presented in accordance with the three phases of the PAOLI (People with Aphasia and Other Layperson Involvement) framework 4 , ensuring that the findings reflect each stage of consultation, co-design, and international voting as describe in Methods. PAOLI Phase I – Consultation Outcomes Participation and Adherence At the first and second Zoom meetings, held in September and November 2023, the participating group included 11 PWA (or assemblies of PWA) and 11 carers or laypersons, representing 10 countries: Argentina, the United Kingdom, Switzerland, Mexico, Hungary, Estonia, France, Slovenia, Belgium, and Cyprus. Each country representative was asked to propose one or two topics. English was the common language during the meetings. Whenever a participant had significant English language difficulties, carers assisted in translation or in reformulation. Twelve countries participated in this process. Several key proposals were put forward: CM & JDJ (France) emphasized the importance of addressing psychological and behavioural issues related to aphasia, noting the emotional and social impacts.CL & NK (UK) suggested a comparative analysis of speech therapy approaches across countries, to identify best practices. AMP (Switzerland) focused on understanding and documenting the intact capacities of people with aphasia, to challenge stereotypes and highlight functional strengths. JS (Slovenia) highlighted the overlooked area of aphasia’s effects on sexual and intimate life, underscoring the need for support in this aspect of daily living. RV (Estonia), a speech pathologist: Stressed the issue of age-related hearing loss in people with aphasia, which can complicate communication and therapy outcomes. In total, among the 12 proposed topics (see below), 11 by PWA or groups of PWA, and 1 by a health professional participant.The early discussions laid the foundation for a genuinely co-produced process, where lived experience shaped the direction of the study from the outset. Proposed Topics A total of 12 topics were proposed across participating countries. These choices came from most of the countries participating in the first Zoom meeting on September 23 rd and were confirmed in a second meeting in November 2023. The topics (see Figure 2) were thematically organized by the authors into three overarching domains: Impact of aphasia on people with aphasia (and related individuals) Impact on the immediate environment (e.g., carers, family, community/communication related) Impact on the extended society. The selection and ranking of topics were not imposed by researchers but emerged from facilitated local discussions, reflection, and consensus among PWA and their supporters. This finding reinforces the value of inclusive national-level PPI structures that allow individuals with communication disabilities to take the lead in defining what matters most. PAOLI Phase II – Development Phase Participation and Adherence In addition to the first 10 countries (Argentina, the United Kingdom, Switzerland, Mexico, Hungary, Estonia, France, Slovenia, Belgium, and Cyprus), 3 countries asked to join for this phase: Australia (CB and DM); German Switzerland (RS); and Italy (GB and DC). Among the five cited persons, 4 were PWA). In total 13 countries participated to the internal national discussions (104 participants, see Table 2). Since the different countries could organize independently their internal voting the number of voting members inside countries was divers. At the June 3 rd online voting meeting, 14 persons from 11 countries (see Table 2) were present and expressed national favourite topics. They were 10 PWA and 5 Laypersons in the online meeting. So, compared to the first September 2023 meeting (22 participants), the adherence was 64%. Most of the absent participants were laypersons, The number of participating PWA was however nearly equal to the number in the phase 1 meeting (10 instead of 11). While countries such as Argentina and Italy actively contributed to the discussions, they were unable to submit votes. In these cases, PWA were either unavailable on the final national discussion meetings or unable to compile a list of priorities in time. So, 11 out of 13 countries voted, resulting in a country voting adherence of 83% (see Table 2. All present countries participated in the discussion. Some participants reported difficulties with comprehension due to translation issues, despite the use of automatic and human translation tools. Topic Prioritization The results of the voting are summarized in Table 2. As mentioned in the Methods section, each country allocated points to up to four priority topics. During the final voting meeting, it was agreed that the topics of ‘Intimacy and Sexual Life after Aphasia’ would be integrated into the broader category of Psychological Changes to ensure appropriate representation. Table 2. Summary of first- to fourth-choice topics voted on by each participating country. Country Number of Participants 1 st Choice 2 nd choice 3rd choice 4 th choice Argentina 12 (10 PWA) No vote - - - Australia 2 (1 PWA) Raising awareness Psychological changes Aphasia hospital support State support Cyprus 8 (7 PWA) Raising awareness Psychological changes Aphasia hospital support State support Estonia 2 (1 PWA) Hearing loss (state support) - France 42 (41 PWA) Raising awareness Psychological changes Aphasia hospital support Energy to disagree Hungary 10 (8 PWA) Find a job State support Raising awareness Speech therapy Italy 2 (2 PWA) No vote- - - Mexico Raising awareness Speech therapy Self-confidence - Slovenia 3 (2 PWA) Intimacy and sex Self-confidence - Switzerland ( German ) 9 (7 PWA) Self-confidence Raising awareness Positive qualities Psychological changes Switzerland ( French ) 10 (9 PWA) Self-confidence Psychological changes Raising Awareness Positive qualities United Kingdom 3 (3 PWA) Raising awareness Self-confidence Find a job Singing together USA (Virginia) 1 (1 PWA) State support Find a job - - The aggregated results were as follows (see Figure 3): Raising Awareness of Aphasia in the Family and Society: 27 points Psychological Changes (including Intimacy and Sexual Life): 17 points Self-Confidence After Aphasia: 16 points Aphasia Support in Hospitals: 10 points (comparison between countries 6 points and universal Speech and Language Therapy methods 4 points). The voting distribution showed some differences and heterogeneity between countries; for example, topics such as “Find a job” or “Singing together” (see Table 2) were prioritized only in some countries. We did not consider the length of time a participants and experts had been living with aphasia to further analyse this heterogeneity. However, an informal survey revealed that nearly all people with aphasia involved in the project had been living with the condition for at least 2 years. Justifications for Priority Topic Selection During the international Zoom meeting held on June 3, 2024, representatives from each participating country explained the rationale behind their selection of priority topics. These explanations, shared either directly by PWA or jointly with carers/health professionals, revealed common themes across countries. The key reasons are summarized below according to each prioritized topic. 1. Raising Awareness of Aphasia in Society and Families This topic has emerged as the highest priority across countries. The rationale included: Difficulty explaining aphasia: PWA consistently reported that aphasia remains poorly understood, even among close relatives and friends. Increasing awareness was seen as a foundational step toward more inclusive communication and services. Impact on societal engagement: Improving public understanding of aphasia could support better interaction between PWA and the general population, including guidance for both PWA and conversation partners on effective communication strategies. Accessible environments: Several participants noted the need for better use of pictograms and visual support in public spaces, which would improve autonomy and participation for individuals with aphasia. 2. Psychological Changes (including Intimacy and Sexuality) Psychosocial adaptation after stroke has been highlighted as a major concern. Reasons included: Emotional isolation and vulnerability: Participants described how aphasia disrupts spontaneity and leads to social withdrawal, with an increased risk of depression or suicidal ideation. At the same time, some PWA reported a sense of liberation from rigid social norms. Limited psychological support: There is a widespread lack of psychologists trained to work with aphasia, compounding emotional challenges. Intimacy and relationships: Changes in romantic and sexual relationships, especially for those not in stable partnerships, were seen as important yet often neglected aspects of poststroke life. These were viewed as integral to the broader category of psychological changes. 3. Self-Confidence and Identity After Aphasia This topic addressed the internal challenges PWA face when trying to rebuild confidence and assert themselves: Loss of self-esteem: Many participants described significant reductions in self-confidence and feelings of social inadequacy. Group communication challenges: The start of meetings, particularly in unfamiliar or larger group settings, was identified as a key moment of discomfort. Need for communication strategies: Participants emphasized the value of learning how to convey their views, assert disagreement, and actively participate in group contexts. 4. Awareness of Speech Therapy and Hospital Engagement with Aphasia This topic addressed healthcare system gaps and variability in poststroke support: Rehabilitation disparities: Participants wished to reflect on their rehabilitation journeys and compare experiences across countries, especially regarding the availability and quality of speech therapy and psychoeducation. Self-training and autonomy: There is interest in exploring national differences in self-management approaches and the role of structured self-directed therapy. Training for communication partners: A recurring suggestion was the need for training programs for conversation partners (e.g., carers, health professionals, and the public) to improve dialogue with PWA. Another important topic named as ‘access to state support’, had certain supporting arguments from various countries . The issues that were discussed inside the voting groups concerning this point, coined the specificity of handicap related to aphasia. This involved the communication difficulties and slower pace at work, making it difficult for PWA to integrate in a working team despite their often-well-preserved cognitive skills. The main points of the ‘access to state support’ topic are summarized as follows: The state provides comprehensive support for people with disabilities, but there is no specific support for people with aphasia due to a lack of awareness. There is no assistance with administrative tasks, taxes, or anything else that needs to be done online. PAOLI Phase III – Translational Phase The third phase focused on translating the identified priorities into action. in French, Spanish, and English between September and October 2024. These meetings targeted the top two priority topics and aimed to explore practical initiatives for raising awareness and support. Participation and Adherence The online meetings took place between September and October 2024 and were split into sessions by language. Participation increased to more than 50 (19 in the English-speaking session, 8 in the French-speaking session, and up to 40 in the Spanish-speaking sessions). With this Language specificity and higher number of participants, discussion was richer, but the chairman had to more control time of speak of each participant, since PWA tended to talk longer. Moreover, summarising intervention was necessary to be sure that every participant could understand. Proposed actions and disseminations 1. Actions for the Top Priority: Raising Awareness of Aphasia in Society and the Family The participants collectively proposed a series of initiatives, including the following: A formal proposal to establish an annual AIA Aphasia Day, presented at the AIA General Assembly and fixed on October 20 th . This event aims to support political and media advocacy for aphasia awareness. Greater inclusion of PWA and regional associations in AIA activities can be facilitated by granting them the status of AIA Observers. Encouraging testimonies from PWA at international conferences to promote real-life experiences and visibility. The development of aphasia-friendly educational campaigns through the collaborative efforts of AIA and LIHA members. 2. Actions for the Second Priority: Psychological and Intimate Changes After Aphasia This theme was addressed in November 2024 through the following initiatives: Three short online presentations were delivered by a stroke survivor and two psychologists living with aphasia. These talks highlighted: The importance of personal agency, such as engagement in physical and social activities. The role of trust, resilience, and long-term psychological adjustment. The concept of "narrative reconstruction" as a therapeutic and identity-building strategy. In addition, further personal testimonies were shared at an international conference, contributing to the identification of practical support strategies and promoting dialogue between countries. 3. Next Steps: Dissemination Health professional expressed a strong interest in publishing the findings of this co-creation and priority-setting process in a specialized PPI peer-reviewed journal. This would support the broader dissemination of outcomes and advocacy for international collaboration in aphasia-focused initiatives. PWA proposed to give courses and lived experiences testimonies in scientific meeting, and to create multilocal actions for the aphasia day in order to increase aphasia awareness. The translational phase further emphasized the leadership role of PWA in shaping awareness and advocacy goals. By guiding dissemination priorities and proposing concrete actions, participants demonstrated that PPI in aphasia research can extend beyond consultation into sustained, empowered engagement. Measurement of PPI impact on the whole process Evolution of the participants to the Zoom meetings : As mentioned in the adherence paragraphs of the results, the number of PWA was quite stable across the meetings (11 PWA participants at the first meeting, 10 at the voting meeting) but increased when language specific meetings were proposed during PAOLI phase 3. In the meetings of September and October 2024, which were split into sessions by language, participation increased to more than 50 (19 in the English-speaking session, 8 in the French-speaking session, and up to 40 in the Spanish-speaking sessions). In the first meetings, some PWA participants reported difficulties with comprehension due to translation issues, despite the use of automatic translation tools. Self-evaluation of the involvement by PWA co-authors: The involvement and self-ratings of the 8 PWA co-authors are presented in Table 3. Five co-authors were present and meaningfully involved in all phases of the project, while three were active in two of the three phases. Among the 8 PWA co-authors, 5 actively proposed topics, all participated in national voting, 7 took part in the final international voting, and all contributed to the dissemination phase. Three PWA co-authors presented the results of this study in a dedicated session at the 2025 European Stroke Forum, held in Prague in March 2025. The overall impact on decision-making was rated as “optimal” by 5 PWA co-authors and “good” by 3 (mean rating: 3.6 out of 4). While none of the PWA Co-authors wrote the manuscript, they were given explanations about how it was constructed and made efforts to read it as best as they could (i.e. the plain summary, and the part they felt important for them). It took them more than one week to read the manuscript. All PWA Co-authors felt satisfied with their feeling of being listened. Only 3 out of 8 felt they optimally understood the discussions, all other rated their comprehension as at least sufficient. All PWA co- authors approved the final manuscript. (See Table 3 for role and rating details). Table 3. Roles of co-authors with aphasia across the different phases of the process, and their self-ratings of effective participation AUTHORS (Maternal Language) PRESENCE ROLE SELF RATING OF IMPACT SELF RATING Of BEING LISTENED TO COMPREHENSION OF DISCUSSION JS (Sl) All phases Lead, welcome, Pr, NV, IV, A, AF 4* 3* 2” (Translation issues) CM (Fr) All phases Pr, NV, IV, A 3 4 3 (Translation issues) JG (Sp, E) All phases Pr. NV, IV, A 3 3 4 RS (G) Phase 2, 3 NV, IV, A, 4 4 4 CL I All phases Pr, NV, IV, A 4 3 3 DC (I) Phase 2, 3 NV, A, D 4 3 2(Translation issues) HM (G, E) Phase 2, 3 NV, IV, D 4 4 4 AK (Gr) All phases Pr. NV, IV, A, D 3 3 2*(Translation issues) Note: Pr is Initial Proposal of Topics; AF = aphasia friendly communication; NV is national discussions and Vote; IV is international final vote of June 3 rd , 2024; A is presentations of Actions, D is Dissemination through presentations. Rating is 0 to 4 1(0 = not at all; 1 = insufficient; 2 = sufficient, 3= good, 4 = very much). Languages: Sl = Slovenian; Fr = French; Sp = Spanish; E = English; I = Italian; G = German; Gr = Greek. * The rating for JS (deceased before manuscript submission) was evaluated by the two corresponding authors Discussion This study around aphasia research priorities presents a unique collaborative experience involving PWA, health professionals, and carers from 12 different countries to identify thematic priorities for individuals living with chronic aphasia. The methodology adhered to the PAOLI phases, encompassing co-design 4 and involved a structured, two-step Communication Process: digital Meetings for Global Exchange facilitated discussions among diverse international stakeholders, and local Decision-Making through National Meetings. The four primary topics identified were as follows: 1) raising awareness of aphasia in society/family, 2) psychological changes in aphasia, 3) self-confidence after aphasia, and 4) raising awareness of the need for speech therapy and hospital attitudes toward aphasia. Interestingly, the first three topics were not directly related to language impairment but rather to the social and personal consequences of this loss of communication efficacy. This initiative demonstrates that PWA can actively participate in, and lead, the identification of international research priorities when supported through inclusive and accessible methods 19 . A defined number of PWA (8 of participating members) could fulfil the criteria of authorship as defined by the International Committee of Medical Journal Editors : substantial contributions to the conception or design of the study or data collection, analysis or interpretation; Writing the study or critical appraisal for important intellectual content; approval of the final version; accountability for all aspects of the study. To support residual language difficulties, certain PWA focused their critical review on select manuscript sections while all authors reviewed the entire document, employing up to one week. The study provides a concrete example of how PPI principles can be applied across multiple countries and languages, moving beyond consultation to coproduction. Our results also suggest a significant PPI impact on the selection of priority topics compared to former studies 20 , particularly in shaping research directions 11 . While members of AIA acknowledged and supported the importance of rehabilitation approaches and aphasia therapy, as well as psychological well-being (including the impact of aphasia), they also stressed the importance of aphasia awareness among families and society 11 discussed the topic of aphasia self-confidence and resilience in social relationships. Particularly, awareness was seen as essential for improving communication performance and fostering greater understanding of communication impairments. One of the key points discussed in this study was adherence to meetings and voting. After the first meeting, adherence of PWA remained relatively stable throughout the process, and the number of participants even increased during phase 3, particularly after introducing language-specific sessions. This trend has also been reported in other patient organizations 21 . While participation rates varied, the preservation of the initial PWA participants after 8 months, at the final international voting online meeting, demonstrates the feasibility of engaging PWA in sustained international co-creation processes 22 , but also the need supporting them during the whole process. The adherence of 83% to the voting itself among the PWA present at this specific meeting, confirms also the implication of their implication and active participation in the process, meantime suggest that they may jump out the active group if optimal conditions are set. Five of the eight PWA co-authors were active in all three phases of the process, and three presented their experiences and data at international conferences, together with layperson co-authors. Their involvement in the decision-making process was rated between good and optimal. Self-rating of “being listened to” was consistently reported as sufficient to optimal. The greatest challenge as in other PPI studies was stimulating participation at the beginning of the project 23 . Out of 21 AIA country members, only 12 took initially par to the project.t. Reported reasons included difficulties in mobilizing members for additional tasks, a decline in collaborative habits following the COVID-19 pandemic, and challenges for some PWA in accessing virtual meetings rather than in-person formats 24 . Rather than viewing nonparticipation as a limitation, these challenges stresses the necessity to overcome specific barriers before initiating a research with PWA and reflect the need for continued development of flexible, accessible models of PPI suited to populations with communication differences 25 . The fact that all authors, laypersons and PWA, participated on their free time and received no financial compensations, could also have prevented a larger implication in the project initiation. The aim of this study was to report the barriers to becoming involved in research as patient partners for people with aphasia (However, participation in research questions is often even lower because of the excessive time taken for training activities and attendance, as well as discontinuity in involvement 23 . Nonparticipation can be attributed to several practical factors, such as difficulties in attending meetings at fixed times due to the need to accommodate multiple time zones. For example, particularly in the initial phase, priority was given to PWA in South America and Europe so that Australia was invited at 3 AM, which was not possible. In the second and 3 rd phases, we could better distribute the timetables, particularly adapting them to the language used of the different discussion meetings (English, French or Spanish). Additionally, health-related issues, such as fatigue, particularly during afternoon meetings, contribute to nonattendance 26 . We observed that, although difficult, trans-linguistic communication seems possible in the aphasic population, there must be a supportive and tailored environment 27 , as is sometimes possible in aphasic urban communities. One of the authors (JMA) attempted to translate the messages into different languages. The recent development of artificial intelligence translation has involved the use of zoom digital tools. Some participants, despite being present, were unable to prepare adequate responses or arguments for discussions, especially if they had not been adequately coached or prepared in advance 28 . This challenge aligns with other studies highlighting the varying abilities of PWA to participate actively in discussions, depending on their level of aphasia severity and prior experience in academic settings 26 . Patients may be more active in proposing research ideas than in proposing priorities and data analyses 28 . Participants with mild to moderate chronic aphasia were generally able to contribute meaningfully, particularly during semi-structured discussions. From a logistical perspective, national associations face challenges in securing appropriate structures and funding to support onsite meetings. However, several groups preferred online meetings, which were more cost-effective and flexible. Notably, participants with experience in PPI research emphasized the importance of building relationship before meetings through one-on-one introductions, short sessions, and regular breaks. In our experience, meetings lasting 1.5 hours with a 10-minute break in the middle were optimal for in-person meetings, whereas 60-minute sessions were optimal for online meetings, demonstrating that higher fatigue levels in aphasia tend to decrease social participation 29 . Participants with aphasia usually mention difficulties during meetings, such as ignoring background noise, controlling negative emotional reactions, focusing, slowing down/taking breaks 30 , and possibly necessitating specific training before digital meetings. Several strategies have been employed to address these challenges. For example, a speaking participant (RS) prepared written comments on psychological changes following aphasia, employing approximately 90 hours to prepare his 7 minutes’ intervention. Another participant, preparing for a presentation at the Prague European Life After Stroke Forum (ELASF) by the Stroke Alliance for Europe, rehearsed her talk 30 times to ensure that it fit within the allocated 10-minute timeframe. Thematic Priorities: Aphasia Awareness and Psychological Issues The first thematic priority, ‘raising awareness of aphasia’, was particularly emphasized by two-thirds of the participating countries. This focus reflects the widespread issue of low aphasia awareness, with studies consistently reporting that fewer than 20% of the general population, including many health professionals, is familiar with aphasia. As reported by the PWA, poor awareness itself was not considered a problem but may have disastrous consequences. First, it decreases knowledge of the consequences for the self-esteem of PWA and prevents strategies to improve communication. Improving aphasia awareness and effective communication resources also improves the environment’s confidence in supporting communication and the effectiveness of their interaction 27 . Recent studies concluded that "aphasia awareness", as seen by PWA, involves understanding that aphasia does not affect intelligence and insists on the importance of communicating effectively with someone with aphasia 31 . These points were frequently highlighted during the group discussions, underscoring the need for public education and training in aphasia communication strategies. The proposal to create an Aphasia International Day by voting has been followed to find a moment where the international community can coordinate some specific actions. Even if there are many national days, weeks, or months of aphasia, it may be fruitful to have a specific moment for joint action. The co-created priorities emerging from this study illustrate that when people with aphasia are empowered to shape research agendas, they face psychosocial and environmental issues that may be underemphasized in clinically driven research. This underlines the value of sustained, inclusive PPI approaches in aphasia and stroke care. The second priority, ‘psychological changes associated with aphasia’, was also discussed in depth given the high frequency of mood disorders associated with aphasia 32 . In fact, PWA are less likely to have their mood assessed after stroke (23% versus 30% in stroke patients without aphasia) but, when evaluated, show higher mood impairment assessed (38% versus 28%) 33 . The specific psychological guidelines addressing long term emotional disturbances in patients with aphasia reflects a gap in clinical practice. Specific therapy manual for Support in Mental health, in person or via telehealth, like the one proposed by the Aphasia PRISM program, will offer precious cues of intervention during the acute phase 34 . While some systematic studies have explored interventions for diagnosed mood disorders, their efficacy is generally limited to mild depression, with less success in addressing moderate or severe depression 35 . Such psychological changes may often lead to suicidal ideations, which may be unnoticed in persons with communication disorders, and aphasia is also perceived by professionals as a barrier to assessment and intervention for suicidality 36 . Despite repeated efforts to develop comprehensive assessment scales for the psychological aspects of PWA patients, such scales seem to be surprisingly absent in the literature 37 . Rehabilitation interventions such as goal setting, psychosocial support, communication partner training, and narrative therapy have been found to be beneficial, but these areas may be underprioritized by caregivers. Competence in both suicidality- and aphasia-friendly communication strategies should be improved in stroke care and rehabilitation 36 , including participation in meaningful and accessible nonverbal activities 38 (see, for example, for personal reflection of RS in Appendix 2). Moreover, specific social networking inside community groups for PWA, including contact with psychologists with aphasia, seems to contribute to awareness of psychological changes, exploiting personal experiences as professionals, and offering valuable insights into the psychological aspects of living with aphasia. One health professional participant (JG) emphasized the importance of narrative frameworks for understanding aphasia: the chaos narrative (characterized by a loss of hope), the restitution narrative (focused on recovery), and the quest narrative (viewing illness as an opportunity for growth). This framework seems to help the spontaneous rebirth of PWA 39 . Another psychologist of the group (CM) has insisted on the trust of the PWA mourning process to find a new “self” and project 40 . These frameworks resonated with participants and contributed to a broader understanding of the psychological impact of aphasia. The topic of ‘intimacy and sexual relationships’ also emerged, with younger participants more actively contributing to the discussion. There were diverging opinions on the relevance of this issue, with some individuals in stable marital relationships feeling that it was less important, whereas those without partners argued for its inclusion in the aphasia community discourse, both in terms of sexuality and self-knowledge. Research has shown that acquired communication impairments can negatively affect sexuality; however, this topic is seldom addressed in communication disorder research 41 . This gap suggests that incorporating discussions of intimacy and sexuality into aphasia-related care would be beneficial. Language barriers and technological solutions An additional challenge discussed was the language barrier in international meetings. While English was chosen as the common language for communication, participants who were nonnative English speakers, particularly those from French- and Spanish-speaking countries, required simultaneous translation. This added complexity and time to discussions, but technological solutions, such as artificial intelligence (AI)-driven translation tools, were introduced to facilitate communication. While these tools were effective for participants who understood written language, they significantly enhanced the inclusivity of the discussions, allowing for more authentic exchanges. The success of AI-based tools and multilingual facilitation in this study shows that technology can enable, not hinder, participatory research with people who have communication needs. This is particularly relevant as PPI expands into global, multilingual settings. Limitations A key limitation of this study is the 63 % participation rate to the first meeting, ac, which could be due to logistical challenges such as time zone differences, health issues, or lack of preparation. Some PWA participants struggled to engage meaningfully in discussions, especially those with more severe aphasia. One example was ZG, from the Hungarian expert group, with a very low expressive capacity (rated severity 2 on ASRS) who could only express themselves through a therapist who helped him through the process (FE). Future studies could address these issues by offering more flexible schedules, preparatory sessions, and support for participants with varying degrees of aphasia severity. Additionally, language barriers pose challenges, particularly for non-English speakers. While translation efforts helped, they extended meeting times and may have hindered engagement. Future research could benefit from advanced multilingual tools to facilitate communication. Additionally, the study’s narrow focus on four thematic priorities may have overlooked other important issues, such as employment or social participation. Future studies should broaden the scope to include these areas. Notably, these limitations reflect broader systemic challenges in operationalizing inclusive PPI, especially across linguistic, cultural, and cognitive differences. Nonetheless, the ability of many participants with aphasia to contribute actively, even across these barriers, demonstrates the viability of inclusive international research coproduction. Future Directions Future research should focus on increasing participation by offering flexible meeting times or asynchronous participation options. Tailored communication support and induction sessions could also improve meaningful involvement. Addressing language barriers through better multilingual tools or providing dedicated translators for each group would enhance inclusivity. Furthermore, studies should include a broader range of themes, such as the impact of aphasia on employment and social relationships, to provide a more comprehensive understanding of PWA’s needs. Evaluating the effectiveness of aphasia awareness campaigns and training programs for healthcare professionals would also provide valuable insights for improving aphasia care across different cultural and regional contexts. This project offers a scalable, replicable model for embedding PPI into international aphasia research. Finally, future work should explore how cocreated research priorities influence funding decisions, policy development, and clinical innovation. Conclusion Despite the complexities of coordinating a multilingual, international, and inclusive PPI initiative, participation throughout the process was strong, and the engagement of PWA was both active and meaningful. The high quality of discussions reflected the impact of accessible materials, careful preparation, and sustained support. The priorities identified, ranging from societal awareness and emotional well-being to intimacy and therapy access, highlighted the psychosocial realities of living with chronic aphasia and the need for person-centred rehabilitation. The study also revealed a widespread desire for reassurance about personal competence and the availability of quality, ongoing aphasia care. Crucially, the project moved beyond discussion to real-world action, including the proposal of an International Aphasia Awareness Day, public education campaigns, and training initiatives for the wider community. These outcomes exemplify what is possible when PWA are not only included but also empowered to cocreate research. Above all, this work reinforces that PWA are not just capable contributors; they are essential partners in shaping the future of aphasia research and services. The multilingual, cross-national, and coproduced nature of this study offers a replicable model for inclusive, impactful research in aphasia and related fields. Abbreviations PPI: Patient and Public Involvement; PWA: People with Aphasia; GRIPP: Guidance for Reporting Involvement of Patients and the Public; PAOLI: People with Aphasia and Other LayPerson Involvement; ASRS: Aphasia Severity Rating Scale; BDAE: Boston Diagnostic Aphasia Examination Declarations Acknowledgements We acknowledge all members of the Expert group, particularly Zoltán Gáspár and Beatriz González Ortuño for their effective presence and participation in the discussion. We also honor with deep sorrow our co-author Jernej Sluga, president of Aphasia International Association and Slovenian disability rights champion, who initiated and participated to this work and died unexpectedly in June 2025. Availability of Data and Material The data generated during the current study and support the conclusions of this article. Any further data queries and requests should be submitted to the corresponding author, Prof Jean-Marie Annonie MD PhD, for consideration. Ethical Approval The study was conducted online and internationally; it received ethics approval for conduct from the Cyprus Bioethics Committee institution of the second corresponding authors: CNBC EP 2023.01.02 Consent to participate Authors and members of the Expert group participated in the discussions and the voting and wanted to have the results of their votes published. All authors and experts group gave consent to participate in the manuscript. Consent for publication : All authors and the experts group gave consent for publication to the manuscript, including JS, who gave his consent for publication before his Passing. Competing interests The authors have no competing interests as defined by BMC, or other interests that might be perceived to influence the results and/or discussion reported in this paper. Consent for Publication Not applicable. Funding There was neither external nor internal funding, except for au support of 400 Euros to JS and HM for participation in an in-presence meeting. Authors' contributions Concerning the role of the authors, SR, JMA, MC and JS initiated the project and organized the meetings. All authors participated actively in the meetings and proposed the initial 12 topics. CM, JS, JG, FE, CL, DC, AK, HM, JMA, MC and SR organized voting and/or voted across countries and contacted the members of the expert group. JMA and FE provided meetings summaries, JMA and MC wrote the main manuscript text, and prepared figures. CB edited the manuscript and corrected two paragraphs in the discussion. CM and JG participated in the discussion on psychological consequences. All authors reviewed the manuscript. References Mc Menamin, R., Isaksen, J., Manning, M. & Tierney, E. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-7344409","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":514801683,"identity":"9b29ddcb-0d38-4a8b-9568-db600f991b86","order_by":0,"name":"Jean Marie Annoni","email":"","orcid":"","institution":"University of Fribourg","correspondingAuthor":false,"prefix":"","firstName":"Jean","middleName":"Marie","lastName":"Annoni","suffix":""},{"id":514801684,"identity":"ef34d522-a0a8-442f-9134-9c2ed1caa3e9","order_by":1,"name":"Marina Charalambous","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAABIklEQVRIiWNgGAWjYJCCAyDCAEQ8YGBIAFKMD4jXkgDRwmwA5eMHyFrYJPBp0W0/+/BwQQ2DvDn72YcfEmq25fFLpD+r+Nn2h4G//QDjZx5MLWZn0g0OzzjGYLizJ91YIuHY7WLJGTlmN3vbDBgkziQwS2PTciCN4TAPG0OCAZAhkcB2O3HDjRy224xALQw3GNiYsWk5/wyo5R9Qy/lnzD8S/oG0pD8rBmmRx6XlBtAW3jaglhtpbBKJbSAtCWbMIC0GOLUAbeHtkzDccOMZm0ViH9AvPW+MJXvOGfMYnklslpyDzWFpzJ95vtnIGwAZNz58u53Hz57+8MOPMjk5ueOHD354gzOsJTCFgE5ibGDC4jACgPEHyVpGwSgYBaNg+AEAPehoikCDHRgAAAAASUVORK5CYII=","orcid":"","institution":"Cyprus University of Technology","correspondingAuthor":true,"prefix":"","firstName":"Marina","middleName":"","lastName":"Charalambous","suffix":""},{"id":514801685,"identity":"01304bc4-278e-427f-aab3-2e4e813fea45","order_by":2,"name":"Jernej Sluga","email":"","orcid":"","institution":"Aphasia International Association (AIA) Maison Des Associations Internationales","correspondingAuthor":false,"prefix":"","firstName":"Jernej","middleName":"","lastName":"Sluga","suffix":""},{"id":514801686,"identity":"2315ad27-bca1-4c3d-b734-58a966d59e8d","order_by":3,"name":"Clotilde Marteel","email":"","orcid":"","institution":"Fédération Nationale des Aphasiques de France, FNAF","correspondingAuthor":false,"prefix":"","firstName":"Clotilde","middleName":"","lastName":"Marteel","suffix":""},{"id":514801687,"identity":"0d3c352d-c118-4e5f-80dd-7d4b11dff494","order_by":4,"name":"Javier Gil","email":"","orcid":"","institution":"Psychotherapy \u0026 Consulting","correspondingAuthor":false,"prefix":"","firstName":"Javier","middleName":"","lastName":"Gil","suffix":""},{"id":514801688,"identity":"7cd679f2-8493-4e07-8dce-5df1975fea8c","order_by":5,"name":"Reto Strähler","email":"","orcid":"","institution":"aphasie suisse","correspondingAuthor":false,"prefix":"","firstName":"Reto","middleName":"","lastName":"Strähler","suffix":""},{"id":514801689,"identity":"7cd72ef6-1015-435f-bc5b-87658852fbf6","order_by":6,"name":"Fanni Eckhardt","email":"","orcid":"","institution":"Stroke Rehabilitation Department of the National Institute of Medical Rehabilitation, Hungarian Music Therapy Association, Hungarian Aphasia Association","correspondingAuthor":false,"prefix":"","firstName":"Fanni","middleName":"","lastName":"Eckhardt","suffix":""},{"id":514801690,"identity":"c8e0d496-76df-468a-8d01-3de6135703b3","order_by":7,"name":"Colin Lyall","email":"","orcid":"","institution":"Say Aphasia","correspondingAuthor":false,"prefix":"","firstName":"Colin","middleName":"","lastName":"Lyall","suffix":""},{"id":514801691,"identity":"b0df781f-a81e-4e2e-8511-cc947e0088fe","order_by":8,"name":"Davide Crovetti","email":"","orcid":"","institution":"Associazioni Italiane Afasici, A.IT.A. Federazione","correspondingAuthor":false,"prefix":"","firstName":"Davide","middleName":"","lastName":"Crovetti","suffix":""},{"id":514801692,"identity":"de2e4a1f-5ef4-48e2-a9d8-f346638541f3","order_by":9,"name":"Hanka Mayhew","email":"","orcid":"","institution":"Say Aphasia","correspondingAuthor":false,"prefix":"","firstName":"Hanka","middleName":"","lastName":"Mayhew","suffix":""},{"id":514801693,"identity":"418ef0a4-5106-482b-9d16-3c4ee77674a6","order_by":10,"name":"Alexia Kountouri","email":"","orcid":"","institution":"Stoke Ambassador, Stroke Association","correspondingAuthor":false,"prefix":"","firstName":"Alexia","middleName":"","lastName":"Kountouri","suffix":""},{"id":514801694,"identity":"5ecac1df-f9ba-4c42-86ab-55ce42ca5734","order_by":11,"name":"Claire Bennington","email":"","orcid":"","institution":"Australian Aphasia Association","correspondingAuthor":false,"prefix":"","firstName":"Claire","middleName":"","lastName":"Bennington","suffix":""},{"id":514801695,"identity":"df33a27c-7d5e-4287-9af4-ef07f1b9da62","order_by":12,"name":"Silvia Rubio","email":"","orcid":"","institution":"Aphasia Hispano-American Ligue, Fundación Arg. de Afasia \"Charlotte Schwarz\"","correspondingAuthor":false,"prefix":"","firstName":"Silvia","middleName":"","lastName":"Rubio","suffix":""}],"badges":[],"createdAt":"2025-08-11 09:08:05","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-7344409/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-7344409/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":91507688,"identity":"8ff15d24-398a-4f59-9577-b0f18f98c0f1","added_by":"auto","created_at":"2025-09-17 08:35:27","extension":"jpeg","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":349040,"visible":true,"origin":"","legend":"\u003cp\u003eThe timeline of the co-design process, as detailed in the methods section. The first step shows the timeline of the voting process, the second step shows the 3 phases of development, and the 3\u003csup\u003erd\u003c/sup\u003e column lists the actions on dissemination\u003c/p\u003e","description":"","filename":"floatimage1.jpeg","url":"https://assets-eu.researchsquare.com/files/rs-7344409/v1/87fc7a63bba5dd6a226a0b0d.jpeg"},{"id":91507684,"identity":"8a9b57e2-7216-4124-beaa-2861b427b7fc","added_by":"auto","created_at":"2025-09-17 08:35:27","extension":"jpeg","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":142810,"visible":true,"origin":"","legend":"\u003cp\u003eList of the 12 topics proposed by the participating countries in phase one and discussed by each country in phase 1.\u003c/p\u003e","description":"","filename":"floatimage2.jpeg","url":"https://assets-eu.researchsquare.com/files/rs-7344409/v1/ca2928b3d46093d63366a602.jpeg"},{"id":91511604,"identity":"c782de84-db00-402a-8a08-684269c0f95b","added_by":"auto","created_at":"2025-09-17 08:51:27","extension":"jpeg","order_by":3,"title":"Figure 3","display":"","copyAsset":false,"role":"figure","size":119145,"visible":true,"origin":"","legend":"\u003cp\u003eTop 4 topics in the vote process of June 3\u003csup\u003erd\u003c/sup\u003e among the most important topics to consider in aphasia daily life and interest.\u003c/p\u003e","description":"","filename":"floatimage3.jpeg","url":"https://assets-eu.researchsquare.com/files/rs-7344409/v1/a9242c0b01086da951df5c73.jpeg"},{"id":91513795,"identity":"e88eae74-70c9-47ea-9697-08f8cf6010eb","added_by":"auto","created_at":"2025-09-17 09:07:28","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":2048850,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-7344409/v1/0d859c88-246d-4d3e-8463-bb5c4adf84de.pdf"},{"id":91507686,"identity":"a48cdecf-2852-4701-a755-cef3b5a129fb","added_by":"auto","created_at":"2025-09-17 08:35:27","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":323438,"visible":true,"origin":"","legend":"","description":"","filename":"Appendices.docx","url":"https://assets-eu.researchsquare.com/files/rs-7344409/v1/df795cdbdf16c31793d1cab9.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"A Global Multilingual Co-Creation of Aphasia Topics Priorities through Patient and Public Involvement","fulltext":[{"header":"Plain English summary","content":"\u003cp\u003eAphasia is a condition that makes it hard for someone to speak, understand, read, or write, most often after a stroke. But the impact goes far beyond language. People with aphasia (PWA) often struggle with loneliness, emotional difficulties, and being misunderstood.\u003c/p\u003e\n\u003cp\u003eAn international study brought together nearly 100 people living with long-term aphasia and health professionals from 13 countries to find out what really matters to them. Instead of researchers deciding, people with aphasia helped lead the project, a method called Patient and Public Involvement (PPI).\u003c/p\u003e\n\u003cp\u003eThe study happened in three steps: first, online meetings gathered ideas; then, small group sessions in each country discussed and ranked them; finally, everyone voted across countries to choose the top priorities. To make sure all could take part, the team used aphasia-friendly materials, live and written translations, and simple communication tools. Despite challenges of working across different languages, participation was high, with most people staying involved throughout.\u003c/p\u003e\n\u003cp\u003eIn the end, four key priorities were chosen:\u003c/p\u003e\n\u003col\u003e\n \u003cli\u003eRaising awareness - so families, friends, and society understand aphasia better.\u003c/li\u003e\n \u003cli\u003eEmotional challenges - such as changes in relationships and loss of closeness.\u003c/li\u003e\n \u003cli\u003eRebuilding confidence - after the life-changing effects of aphasia.\u003c/li\u003e\n \u003cli\u003eImproving therapy - especially how hospitals and services support treatment.\u003c/li\u003e\n\u003c/ol\u003e\n\u003cp\u003eThis study shows that with the right support, people with aphasia can speak up about what matters most. Their voices highlight not just medical needs, but the full picture of living with aphasia, guiding future care, research, and policies worldwide.\u003c/p\u003e"},{"header":"Introduction","content":"\u003cp\u003eIn recent decades, the active involvement of individuals with lived experience as coresearchers and decision-makers in health research has gained momentum, particularly through the advancement of Patient and Public Involvement (PPI) methodologies. This paradigm shift is driven by ethical imperatives, democratic values, and the recognition that research is more relevant, effective, and impactful when shaped by those directly affected by the outcomes\u0026nbsp;\u003csup\u003e1,2\u003c/sup\u003e. The 2022 report by the Council for International Organizations of Medical Sciences (CIOMS) further underscored this shift, outlining international guidance on involving patients in all stages of research, from setting priorities to designing studies and disseminating findings\u0026nbsp;\u003csup\u003e3\u003c/sup\u003e.\u003c/p\u003e\n\u003cp\u003eIn the field of aphasia, PPI presents both a necessity and a challenge. Aphasia, a communication disorder most often caused by stroke, has historically excluded individuals from research roles because of perceived language and cognitive barriers\u0026nbsp;\u003csup\u003e4\u003c/sup\u003e. However, inclusive research frameworks now demonstrate that people with aphasia (PWA) can meaningfully participate in codesign and coproduction when supported by accessible and adapted methods\u0026nbsp;\u003csup\u003e4,5\u003c/sup\u003e. PPI in aphasia research is especially important for enhancing the relevance of research topics, fostering empowerment, and promoting patient-centred services that reflect real-life needs and experiences\u0026nbsp;\u003csup\u003e6\u003c/sup\u003e.\u003c/p\u003e\n\u003cp\u003eAmong chronic neurological conditions, aphasia is uniquely suited for developing and testing inclusive PPI models. Research on how communication, participation, and collaboration are structured is challenging. Involving PWA in priority setting also helps ensure that emerging research agendas address not only clinical or linguistic outcomes but also broader psychosocial and identity-related issues central to quality of life\u0026nbsp;\u003csup\u003e7,8\u003c/sup\u003e. Previous national and international studies have highlighted recurring concerns such as the need to increase public awareness of aphasia, improve psychological support, and enhance the availability of meaningful speech therapy and communication access, integrating international consensus\u0026nbsp;\u003csup\u003e9\u0026ndash;13\u003c/sup\u003e.\u0026nbsp;\u0026nbsp;However,\u0026nbsp;number of these works have been national in scope, leaving less attention given to global and multilingual consensus-building led by people with lived experience.\u0026nbsp;Moreover, research on aphasia topics tends to focus on the rehabilitation phase, while improvement of care allows longer chronic survival with ongoing impairments. Among aphasia associations in different countries, with PWA in a chronic and stable condition, both PWA and laypersons were interested in examining how aphasia could impact such identification.\u003c/p\u003e\n\u003cp\u003eThe project has been initiated by 3 co-authors: i) JS, a former engineer and co-founder of an Informatics company in Ljubljana, Slovenia, stroke survivor living with aphasia for nearly 30 years and president of the Association Internationale Aphasia (AIA). ii) JMA a neurologist, former vice president of Aphasie Suisse and board member of AIA, iii) SR, a linguistic and advocate of the Fundaci\u0026oacute;n Argentina de Afasia \u0026quot;Charlotte Schwarz\u0026rdquo; in Buenos Aires, and promoter of the Spanish American league (Liga Hispano-Americans de personas con afasia, LIHA), dedicated in raising aphasia awareness in the Spanish-speaking countries. \u0026nbsp; They were helped by MC (speech therapist, member of AIA board, specialized in aphasia rehabilitation and PPI principles) and by stroke survivors with aphasia, active members of AIA,\u003c/p\u003e\n\u003cp\u003eAssociation Internationale Aphasia\u003cem\u003e\u0026nbsp;(\u003c/em\u003eAIA) is a nonprofit organization founded in 1983 by a Belgian person with lived experience of aphasia. AIA brings together national aphasia-related associations from different countries with the mission of creating stronger links between them, encouraging initiatives to promote aphasia awareness and care, and sharing experiences across various initiatives. A distinctive feature of AIA is that each country has a representative, who is usually a person with aphasia, together with a carer or a healthy family member. The current president is Jernej Sluga (JS), and the vice president is Alexia Kountouri (AK), both stroke survivors living from aphasia. The board also includes three PWA and four laypersons to who support the administrative work (legal, financial, and website-related issues). The contact address is either the person with aphasia or a family member/carer. \u0026nbsp; The Liga Hispano-Americans de personas con afasia (LIHA) also aims to create an alliance of different groups with health professionals specializing in aphasia rehabilitation, people with aphasia, family members and friends, as well as interested people, to raise awareness about aphasia, and help prevent it through better control of risk factors.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eWe initiated a global, multilingual project grounded in the PPI methodology. Through close collaboration with PWA, carers, and allied health professionals in 13 countries, and guided by inclusive strategies such as aphasia-friendly materials and real-time translation, we co-created a set of shared thematic priorities for the aphasia community to guide future research. The aim of this study was to collaboratively identify and prioritize research topics that matter\u0026nbsp;most to PWA\u0026nbsp;through a multilingual, PPI process across diverse cultural and linguistic contexts. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe central research question guiding this initiative was as follows: \u003cem\u003eWhich aphasia-related research topics are most important and widely shared across countries, as identified by people with aphasia themselves?\u003c/em\u003e\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003e\u003cstrong\u003eEthics\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe study was conducted online and internationally; it received ethics approval for conduct from the Cyprus Bioethics Committee, institution of the second corresponding author: CNBC EP 2023.01.02.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eDesign\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study followed a three-phase longitudinal design, guided by Patient and Public Involvement (PPI) principles and the PAOLI (People with Aphasia and Other Layperson Involvement) framework\u0026nbsp;\u003csup\u003e4\u003c/sup\u003e. The project was conducted by a research team that included people with lived experience of aphasia and aphasia-related expertise (all co-authors of this study). Participants with lived experience were also engaged through National Aphasia Associations across the globe. All phases prioritized accessible communication (visual aids, online translation, reformulation\u0026hellip;), linguistic inclusion, and co-decision-making between people with lived experience, carers, and health professionals. The study is reported in accordance with the GRIPP2-LF (Guidance for Reporting Involvement of Patients and the Public \u0026ndash; Long Form). See GRIPP-LF in Appendix 1.\u003c/p\u003e\n\u003cp\u003eThe project used a structured three-phase process:\u003c/p\u003e\n\u003col start=\"1\" type=\"1\"\u003e\n \u003cli\u003e\u003cstrong\u003eConsultation meetings:\u003c/strong\u003e communication-accessible online meetings to generate initial priority topics.\u003c/li\u003e\n \u003cli\u003e\u003cstrong\u003eNational-level co-design meetings:\u003c/strong\u003e group activities to refine and rank the topics, then an \u003cstrong\u003einternational online voting meeting\u003c/strong\u003e multilingual processes to select and share the final priorities.\u003c/li\u003e\n \u003cli\u003ePlanning \u003cstrong\u003einternational online meeting\u003c/strong\u003e to promote dissemination of Priorities Topics.\u003c/li\u003e\n\u003c/ol\u003e\n\u003ch3\u003e\u003cem\u003eCo-researchers with lived experience\u003c/em\u003e\u003c/h3\u003e\n\u003cp\u003eThis project was led by PWA and health professionals affiliated with national aphasia associations, as equal part of the research team. A total of 8 individuals with aphasia and 5 health professionals were involved as co-researchers, contributing to the study design, the thematic development, voting procedures, and writing the manuscript (co-authors with lived experience). These participants played key roles in the research team, organizing the discussion inside their national associations and local aphasia communities, but also exposing the results and their perspectives in the online meetings and deciding how to promote dissemination of the results.\u0026nbsp;In line with recent international standards for characterizing participants in poststroke aphasia research, data were collected on 14 clinical and demographic variables for all participating PWA\u0026nbsp;\u003csup\u003e14\u003c/sup\u003e. This included age, years of education, biological sex, language of treatment/testing, primary language, other languages spoken, history of neurological or cognitive conditions, stroke history, lesion hemisphere, time since onset of aphasia, and comorbidities\u0026nbsp;\u003csup\u003e14\u003c/sup\u003e. Additionally, aphasia severity at the time of participation was documented via the Aphasia Severity Rating Scale (ASRS) from the Boston Diagnostic Aphasia Examination\u0026nbsp;\u003csup\u003e15\u003c/sup\u003e. For health professionals, we recorded their roles in national or international aphasia organizations and any lived or caregiving experience related to aphasia.\u0026nbsp;See Table 1a and 1b for full research team\u0026rsquo;s (people\u0026rsquo; with lived experiences and health professionals) details.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 1a.\u003c/strong\u003eDemographic and clinical characteristics of the co-authors with aphasia.\u003c/p\u003e\n\u003ctable border=\"0\" cellspacing=\"0\" cellpadding=\"0\" width=\"612\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003ePWA\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eMC\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eJS\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eJG\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eRS\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eCL\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eDC\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eHM\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eAK\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eAge (Y)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e45\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e65\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eNA\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e59\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e63\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e62\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e52\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e35\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eYears of schooling\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e20\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e18\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e19\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e16\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e18\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e19\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e17\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e19\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eLevel\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eMA\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eBA\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eMS\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eBA\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eMA\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eMS\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eBA\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eMA\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eProfession\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003ePsychologist\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eEngineer\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eSocial Worker\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eEngineer\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eEnvironmental Engineer\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eArchitect\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eTeacher\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eAdmin\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003ePost aphasia RTW\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eDirector\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eTherapist\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eCharity founder\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eAdmin/\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eRole related to aphasia\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eVice president FNAF\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003ePresident AIA\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eLead Survivors Groups\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003ePresident of Say aphasia\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eBoard\u003c/p\u003e\n \u003cp\u003eAITA\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eGerman aphasia Assoc. and AIA\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eVice president AIA\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eMarital Status\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eDivorced\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eDivorced\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eMarried\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eMarried\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eMarried\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eMarried\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eWidowed\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eSingle\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eBiological sex (M/F/O)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eF\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eM\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eM\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eM\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eM\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eM\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eF\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eF\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eNative language\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eFrench\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eSlovenian\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eSpanish\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eSwiss German\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eEnglish\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eItalian\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eGerman\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eGreek\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eActual Language\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eFrench\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eSlovenian/English\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eSpanish/English\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eSwiss German\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eEnglish\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eItalian\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eEnglish\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eGreek, English\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eStroke\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eyes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eStroke Type\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eH\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eH\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eI\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eI + H\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eI\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eH\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eH\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eH\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eMonths post-stroke\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e270\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e360\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e60\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e72\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e146\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e192\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e120\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e72\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eLesion Side\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eL\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eL\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eL\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eL\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eL\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eR\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eL\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eL\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eHemiplegia\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eR\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eR\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eL\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eAphasia\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eAphasia Severity\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003eNote:\u0026nbsp;\u003cem\u003eNote\u003c/em\u003e: BA: Bachelor of Arts, MA : Master of Art; MS: Master of Science, FNAF: French Aphasia Association; RTW: Return to Work; AITA: Italian Aphasia Association; AIA aphasia International Association; L: Left; R: Right; I: Ischemic; H; NA; not available; M: Male; F: Female.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 1b.\u003c/strong\u003e Health Professionals co-authors demographics\u0026nbsp;\u003c/p\u003e\n\u003ctable border=\"0\" cellspacing=\"0\" cellpadding=\"0\" width=\"97%\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eHealth Professionals\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eJMA\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eMC\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eFE\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eCB\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eSR\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eAge (Y)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e68\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e45\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e34\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e57\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e84\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eYears of education (YY)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e19\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e22\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e19\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e22\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e19\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eEducation\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eMD\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003ePhD\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eMS\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003ePhD\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003ePHD\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eProfession\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eMedicine\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eSpeech therapist\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eMusic Therapist\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eSpeech Pathology\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eNeurolinguistic\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eEmployment\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eNeurology\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eAcademic\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eMusical Therapist\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eAcademic\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eAcademic\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eRole related to aphasia\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eBoard Member AIA\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003ePresident Cyprus Stroke Assoc.\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eBoard AIA\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eBoard Australian Aphasia Assoc.\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eSchwarz Found. for Aphasia Argentina\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eMarital Status\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eMarried\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eNA\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eMarried\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eMarried\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eWidowed\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eBiological sex\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eM\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eF\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eF\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eF\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eF\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eNative language\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eFrench/Italian\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eCypriot\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eHungarian\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eEnglish\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eSpanish\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eActual Language\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eFrench, Italian, German, English\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eCypriote, English\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eHungaria, English\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eEnglish\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eSpanish, French\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003eNote:\u0026nbsp;\u003cem\u003eNote\u003c/em\u003e: BA: Bachelor of Arts, MS: Master of Science; AIA aphasia International Association; M: Male; F: Female.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eExpert with lived experience\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;In addition to the authors, participants in the consultation and voting international meetings were all members from both international aphasia networks: AIA and LIHA. These included PWA, carers, and health professionals (C/HP), with each country represented by 1 to 3 individuals and were part of the expert group. In total 13 aphasia National associations joined the project. \u0026nbsp; Representatives of Bolivia and Uruguay also encouraged the project and participated as observers, given the lack of availability of their aphasia national associations.\u003c/p\u003e\n\u003cp\u003eThe distribution of representatives by country for participation in at least one meeting was as follows:\u003c/p\u003e\n\u003cul\u003e\n \u003cli\u003eUnited Kingdom: 1\u0026ndash;2 PWA, 1 C/HP\u003c/li\u003e\n \u003cli\u003eFrance: 1\u0026ndash;2 PWA\u003c/li\u003e\n \u003cli\u003eAustralia: 1 PWA, 1 C/HP\u003c/li\u003e\n \u003cli\u003eSwitzerland (French-speaking): 1\u0026ndash;2 PWA, 1 C/HP\u003c/li\u003e\n \u003cli\u003eSwitzerland (German-speaking): 1 PWA, 1 C/HP\u003c/li\u003e\n \u003cli\u003eCyprus: 1 PWA, 1 C/HP\u003c/li\u003e\n \u003cli\u003eHungary: 1 PWA, 1 C/HP\u003c/li\u003e\n \u003cli\u003eUSA (Virginia): 1 PWA, 1 C/HP\u003c/li\u003e\n \u003cli\u003eMexico: 1 PWA, 1 C/HP\u003c/li\u003e\n \u003cli\u003eSlovenia: 1 PWA\u003c/li\u003e\n \u003cli\u003eEstonia: 1 PWA, 1 C/HP\u003c/li\u003e\n \u003cli\u003eArgentina: 1\u0026ndash;5 PWA, 2 C/HP\u003c/li\u003e\n \u003cli\u003eIndia: 1 HP\u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003e\u003cem\u003eNational participants and experts with lived experience\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eFinally, PWA experts and Participants were active members of national aphasia communication groups and with previous experience engaging in group discussions or advocacy work, to take part in the internal national discussions in their respective countries. A total of more than 100 participants living with aphasia from 13 countries took\u0026nbsp;part in at least one phase of the process (see, in table 2; number of PWA participating to the national discussions).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eProject\u0026rsquo;s Trajectory\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePAOLI Phase I \u0026ndash; Consultation\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe consultation phase began in September 2023 and included two 90-minute online meetings with participants from the AIA and LIHA networks.\u0026nbsp;Initially, JS, JMA and SR, with the help of MC (speech therapist specialized in aphasia rehabilitation and PPI principles), contacted AIA members, explaining the project in an aphasia-friendly manner, with the following message:\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026nbsp;\u0026ldquo;We\u003c/em\u003e\u003cem\u003e\u0026nbsp;would like \u003cstrong\u003eto invite you to a Zoom meeting with people with aphasia \u003cu\u003efrom different countries\u003c/u\u003e,\u0026nbsp;\u003c/strong\u003eas well as a carer or professional (to help with the translation/discussion).\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eDuring this meeting, we \u003cstrong\u003e\u003cu\u003eask you to share 2 - 3 topics\u003c/u\u003e\u0026nbsp;\u003c/strong\u003ethat you feel are \u003cstrong\u003e\u003cu\u003emost important\u003c/u\u003e\u003c/strong\u003e to talk about.\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eBefore the Zoom meeting, please talk to your local aphasia and \u003cstrong\u003echoose a person to represent your country/region at the meeting on September 25\u003csup\u003eth\u003c/sup\u003e, 2023\u003c/strong\u003e.\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eThe meeting will be in \u003cstrong\u003eEnglish\u003c/strong\u003e. We will do our best to \u003cstrong\u003etranslate\u003c/strong\u003e the most important points into \u003cstrong\u003eFrench and Spanish\u003c/strong\u003e\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e.\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eInvitations were shared via email, and each session was followed by aphasia-friendly summaries in English, French, and Spanish to support participant understanding and retention. The representative could reflect alone or as a group. The important point is that the proposal should be done by a PWA or a group of PWA. At the first meeting, there was a participation from different PWA and laypersons of 11 countries, and in the second meeting (October 2023) there were 12 PWA and 9 laypersons. Since then and in the following meetings, participants varied, but the following PWA co-researchers, were always present: CM, JG, CL, HM, DC, AK. RS.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe participants were asked to prepare one topic that they considered important in living with aphasia. These contributions were used to generate an initial pool of potential priority topics. The meetings, held between September and October 2023, aimed to establish a starting list of at least 12 topics for further discussion.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePAOLI Phase II \u0026ndash; National development and co-prioritization\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eBetween January and May 2024, each country independently developed and refined its list of priorities via codesign methods\u003csup\u003e16\u003c/sup\u003e, tailored to its local context, language, and participant needs.\u0026nbsp;The representative members with aphasia with the laypersons, contacted their aphasia groups, and organised meetings to discuss the different topics then to vote on which are the most important.\u0026nbsp;Different formats were used across countries, including structured in-person focus groups; informal discussions within national associations; and one to three online meetings, depending on accessibility and participant preferences. This flexible and inclusive approach enabled meaningful contributions across diverse levels of aphasia severity and technological access.\u0026nbsp;National teams selected 3\u0026ndash;4 top-priority topics based on group consensus. Some countries used an in-person format, (German CH 9 PWA and 2 Laypersons, Mexico 13 PWA and 1 Layperson, French speaking Switzerland 10 PWA and 1 Layperson, and 7 PWA and 1 Layperson Cyprus) which allowed a richer exchange and argumentation with personal experience. Other countries used online meetings to involve more participants (for example, France completed 2 online meetings with 41 French PWA via Zoom in different groups).\u003c/p\u003e\n\u003cp\u003eThe development phase culminated in a joint international online session on June 3, 2024, where each country presented its final selections. The group then conducted a comparative analysis to identify the four most consistently prioritized topics across countries. Justification of topic prioritization was also completed by country voting members.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ePAOLI Phase III \u0026ndash; Translation and Dissemination\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe final phase, from September to October 2024, focused on translating priorities into action and planning dissemination. Specifically, participants with aphasia and laypersons were asked to suggest and propose a dissemination plan. In this phase, PWA from non-English speaking countries found the English-only meetings too difficult and requested that the discussion be held in different languages to make the involvement more meaningful. Six language-specific online meetings (Spanish, English, and French/Italian) were held to refine the four top-ranked topics and co-develop strategies for awareness-raising and knowledge exchange. The participants discussed initiatives such as coordinating an International Aphasia Awareness Day; sharing lived experience testimonies at conferences; promoting multilingual, aphasia-friendly educational campaigns; and encouraging greater inclusion of PWA in organizational decision-making roles. See Figure 1 for the timeline of the three-step co-design process.\u003c/p\u003e\u003cp\u003e\u003cstrong\u003eTranslation and Note-Taking\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eTranslations were handled primarily by members of the research team: first author JMA translated between French, Italian, German, and English; SR translated between Spanish and French; and CF between Spanish and English. JMA also took meeting notes and prepared AI-generated summaries, which were distributed to participants. Summaries are typically produced in English and translated into French and Spanish, and occasionally into Italian via the DeepL (basic professional version) translation tool.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTopic Ranking by Country\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAt the end of the development phase, each participating country was asked to rank up to four priority topics from the original list of twelve. Countries could choose to rank fewer than four topics if preferred. A point-based system was used to weight the responses: 4 points for first, 3 points for second, 2 points for third, and 1 point for fourth.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eQualitative and Quantitative Evidence of the Impact of PPI\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eEvaluating the impact of Patient and Public Involvement (PPI) on the whole process, participants, and outcomes is essential in participatory studies\u0026nbsp;\u003csup\u003e2,17,18\u003c/sup\u003e. In this project, the impact was assessed in three ways:\u003c/p\u003e\n\u003col start=\"1\" type=\"1\"\u003e\n \u003cli\u003eTopic generation and adherence: We analysed how many of the initial 12 proposed topics came directly from PWA compared to those suggested by carers or laypersons. We also measured participant adherence at the time of voting.\u003c/li\u003e\n \u003cli\u003eCo-author feedback: A questionnaire was sent to co-authors, asking them to reflect on their perceived role in shaping the results, their sense of being understood, and their understanding of the discussions.\u003c/li\u003e\n \u003cli\u003eComparison with other studies: In the discussion section, the results of this project are compared with findings from similar studies to contextualize the impact of PPI.\u003c/li\u003e\n\u003c/ol\u003e"},{"header":"Results","content":"\u003cp\u003eThe results of this study will be presented in accordance with the three phases of the PAOLI (People with Aphasia and Other Layperson Involvement) framework\u003csup\u003e4\u003c/sup\u003e, ensuring that the findings reflect each stage of consultation, co-design, and international voting as describe in Methods.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003e\u003cu\u003ePAOLI Phase I \u0026ndash; Consultation Outcomes\u003c/u\u003e\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eParticipation and Adherence\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAt the first and second Zoom meetings, held in September and November 2023, the participating group included 11 PWA (or assemblies of PWA) and 11 carers or laypersons, representing 10 countries: Argentina, the United Kingdom, Switzerland, Mexico, Hungary, Estonia, France, Slovenia, Belgium, and Cyprus. Each country representative was asked to propose one or two topics. English was the common language during the meetings. Whenever a participant had significant English language difficulties, carers assisted in translation or in reformulation.\u0026nbsp;Twelve countries participated in this process.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eSeveral key proposals were put forward: CM \u0026amp; JDJ (France) emphasized the importance of addressing psychological and behavioural issues related to aphasia, noting the emotional and social impacts.CL \u0026amp; NK (UK) suggested a comparative analysis of speech therapy approaches across countries, to identify best practices. AMP (Switzerland) focused on understanding and documenting the intact capacities of people with aphasia, to challenge stereotypes and highlight functional strengths. JS (Slovenia) highlighted the overlooked area of aphasia\u0026rsquo;s effects on sexual and intimate life, underscoring the need for support in this aspect of daily living. RV (Estonia), a speech pathologist: Stressed the issue of age-related hearing loss in people with aphasia, which can complicate communication and therapy outcomes.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eIn total, among the 12 proposed topics (see below), 11 by PWA or groups of PWA, and 1 by a health professional participant.The early discussions laid the foundation for a genuinely co-produced process, where lived experience shaped the direction of the study from the outset.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eProposed Topics\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eA total of 12 topics were proposed across participating countries. These choices came from most of the countries participating in the first Zoom meeting on September 23\u003csup\u003erd\u003c/sup\u003e and were confirmed in a second meeting in November 2023. The topics (see Figure 2) were thematically organized by the authors into three overarching domains:\u003c/p\u003e\n\u003col\u003e\n \u003cli\u003eImpact of aphasia on people with aphasia (and related individuals)\u003c/li\u003e\n \u003cli\u003eImpact on the immediate environment (e.g., carers, family, community/communication related)\u003c/li\u003e\n \u003cli\u003eImpact on the extended society.\u003c/li\u003e\n\u003c/ol\u003e\n\u003cp\u003eThe selection and ranking of topics were not imposed by researchers but emerged from facilitated local discussions, reflection, and consensus among PWA and their supporters. This finding reinforces the value of inclusive national-level PPI structures that allow individuals with communication disabilities to take the lead in defining what matters most.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003e\u003cu\u003ePAOLI Phase II \u0026ndash; Development Phase\u003c/u\u003e\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eParticipation and Adherence\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eIn addition to the first 10 countries (Argentina, the United Kingdom, Switzerland, Mexico, Hungary, Estonia, France, Slovenia, Belgium, and Cyprus), 3 countries asked to join for this phase: Australia (CB and DM); German Switzerland (RS); and Italy (GB and DC). Among the five cited persons, 4 were PWA). In total 13 countries participated to the internal national discussions (104 participants, see Table 2). \u0026nbsp; \u0026nbsp;Since the different countries could organize independently their internal voting the number of voting members inside countries was divers.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eAt the June 3\u003csup\u003erd\u003c/sup\u003e online voting meeting, 14 persons from 11 countries (see Table 2) were present and expressed national favourite topics. They were 10 PWA and 5 Laypersons in the online meeting. So, compared to the first September 2023 meeting (22 participants), the adherence was 64%. Most of the absent participants were laypersons, The number of participating PWA was however nearly equal to the number in the phase 1 meeting (10 instead of 11). While countries such as Argentina and Italy actively contributed to the discussions, they were unable to submit votes. In these cases, PWA were either unavailable on the final national discussion meetings or unable to compile a list of priorities in time. So, 11 out of 13 countries voted, resulting in a country voting adherence of 83% (see Table 2. All present countries participated in the discussion. Some participants reported difficulties with comprehension due to translation issues, despite the use of automatic and human translation tools.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTopic Prioritization\u003c/strong\u003e\u003cbr\u003eThe results of the voting are summarized in Table 2. As mentioned in the Methods section, each country allocated points to up to four priority topics. During the final voting meeting, it was agreed that the topics of \u0026lsquo;Intimacy and Sexual Life after Aphasia\u0026rsquo; would be integrated into the broader category of \u003cem\u003ePsychological Changes\u003c/em\u003e to ensure appropriate representation.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 2.\u0026nbsp;\u003c/strong\u003eSummary of first- to fourth-choice topics voted on by each participating country.\u003c/p\u003e\n\u003ctable border=\"0\" cellspacing=\"0\" cellpadding=\"0\" width=\"604\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eCountry\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eNumber of Participants\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003e1\u003csup\u003est\u003c/sup\u003e Choice\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003e2\u003csup\u003end\u003c/sup\u003e choice\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003e3rd choice\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003e4\u003csup\u003eth\u003c/sup\u003e choice\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eArgentina\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e12 (10 PWA)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eNo vote\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eAustralia\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e2 (1 PWA)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eRaising awareness\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003ePsychological changes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eAphasia hospital support\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eState support\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eCyprus\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e8 (7 PWA)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eRaising awareness\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003ePsychological changes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eAphasia hospital support\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eState support\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eEstonia\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e2 (1 PWA)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eHearing loss\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e(state support)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eFrance\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e42 (41 PWA)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eRaising awareness\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003ePsychological changes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eAphasia hospital support\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eEnergy to disagree\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eHungary\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e10 (8 PWA)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eFind a job\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eState support\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eRaising awareness\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eSpeech therapy\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eItaly\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e2 (2 PWA)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eNo vote-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eMexico\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eRaising awareness\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eSpeech therapy\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eSelf-confidence\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eSlovenia\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e3 (2 PWA)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eIntimacy and sex\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eSelf-confidence\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eSwitzerland\u0026nbsp;\u003c/em\u003e(\u003cem\u003eGerman\u003c/em\u003e)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e9 (7 PWA)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eSelf-confidence\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eRaising awareness\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003ePositive qualities\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003ePsychological changes\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eSwitzerland\u0026nbsp;\u003c/em\u003e(\u003cem\u003eFrench\u003c/em\u003e)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e10 (9 PWA)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eSelf-confidence\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003ePsychological changes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eRaising Awareness\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003ePositive qualities\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eUnited Kingdom\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e3 (3 PWA)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eRaising awareness\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eSelf-confidence\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eFind a job\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eSinging together\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eUSA (Virginia)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e1 (1 PWA)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eState support\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eFind a job\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e-\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u0026nbsp;The aggregated results were as follows (see Figure 3):\u003c/p\u003e\n\u003col start=\"1\" type=\"1\"\u003e\n \u003cli\u003eRaising Awareness of Aphasia in the Family and Society: 27 points\u003c/li\u003e\n \u003cli\u003ePsychological Changes (including Intimacy and Sexual Life): 17 points\u003c/li\u003e\n \u003cli\u003eSelf-Confidence After Aphasia: 16 points\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eAphasia Support in Hospitals: 10 points (comparison between countries 6 points and universal Speech and Language Therapy methods 4 points).\u0026nbsp;\u003c/li\u003e\n\u003c/ol\u003e\n\u003cp\u003eThe voting distribution showed some differences and heterogeneity between countries; for example, topics such as \u0026ldquo;Find a job\u0026rdquo; or \u0026ldquo;Singing together\u0026rdquo; (see Table 2) were prioritized only in some countries. We did not consider the length of time a participants and experts had been living with aphasia to further analyse this heterogeneity. However, an informal survey revealed that nearly all people with aphasia involved in the project had been living with the condition for at least 2 years.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eJustifications for Priority Topic Selection\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eDuring the international Zoom meeting held on June 3, 2024, representatives from each participating country explained the rationale behind their selection of priority topics. These explanations, shared either directly by PWA or jointly with carers/health professionals, revealed common themes across countries. The key reasons are summarized below according to each prioritized topic.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e1. Raising Awareness of Aphasia in Society and Families\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThis topic has emerged as the highest priority across countries. The rationale included:\u003c/p\u003e\n\u003cul\u003e\n \u003cli\u003eDifficulty explaining aphasia: PWA consistently reported that aphasia remains poorly understood, even among close relatives and friends. Increasing awareness was seen as a foundational step toward more inclusive communication and services.\u003c/li\u003e\n \u003cli\u003eImpact on societal engagement: Improving public understanding of aphasia could support better interaction between PWA and the general population, including guidance for both PWA and conversation partners on effective communication strategies.\u003c/li\u003e\n \u003cli\u003eAccessible environments: Several participants noted the need for better use of pictograms and visual support in public spaces, which would improve autonomy and participation for individuals with aphasia.\u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003e2. \u003cem\u003ePsychological Changes (including Intimacy and Sexuality)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003ePsychosocial adaptation after stroke has been highlighted as a major concern. Reasons included:\u003c/p\u003e\n\u003cul\u003e\n \u003cli\u003eEmotional isolation and vulnerability: Participants described how aphasia disrupts spontaneity and leads to social withdrawal, with an increased risk of depression or suicidal ideation. At the same time, some PWA reported a sense of liberation from rigid social norms.\u003c/li\u003e\n \u003cli\u003eLimited psychological support: There is a widespread lack of psychologists trained to work with aphasia, compounding emotional challenges.\u003c/li\u003e\n \u003cli\u003eIntimacy and relationships: Changes in romantic and sexual relationships, especially for those not in stable partnerships, were seen as important yet often neglected aspects of poststroke life. These were viewed as integral to the broader category of psychological changes.\u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003e3. \u003cem\u003eSelf-Confidence and Identity After Aphasia\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThis topic addressed the internal challenges PWA face when trying to rebuild confidence and assert themselves:\u003c/p\u003e\n\u003cul\u003e\n \u003cli\u003eLoss of self-esteem: Many participants described significant reductions in self-confidence and feelings of social inadequacy.\u003c/li\u003e\n \u003cli\u003eGroup communication challenges: The start of meetings, particularly in unfamiliar or larger group settings, was identified as a key moment of discomfort.\u003c/li\u003e\n \u003cli\u003eNeed for communication strategies: Participants emphasized the value of learning how to convey their views, assert disagreement, and actively participate in group contexts.\u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003e\u003cem\u003e4. Awareness of Speech Therapy and Hospital Engagement with Aphasia\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThis topic addressed healthcare system gaps and variability in poststroke support:\u003c/p\u003e\n\u003cul\u003e\n \u003cli\u003eRehabilitation disparities: Participants wished to reflect on their rehabilitation journeys and compare experiences across countries, especially regarding the availability and quality of speech therapy and psychoeducation.\u003c/li\u003e\n \u003cli\u003eSelf-training and autonomy: There is interest in exploring national differences in self-management approaches and the role of structured self-directed therapy.\u003c/li\u003e\n \u003cli\u003eTraining for communication partners: A recurring suggestion was the need for training programs for conversation partners (e.g., carers, health professionals, and the public) to improve dialogue with PWA.\u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003eAnother important topic named as \u0026lsquo;access to state support\u0026rsquo;, had certain supporting arguments from various countries\u003cem\u003e.\u0026nbsp;\u003c/em\u003eThe issues that were discussed inside the voting groups concerning this point, coined the specificity of handicap related to aphasia. This involved the communication difficulties and slower pace at work, making it difficult for PWA to integrate in a working team despite their often-well-preserved cognitive skills. The main points of the \u0026lsquo;access to state support\u0026rsquo; topic are summarized as follows:\u003c/p\u003e\n\u003cul\u003e\n \u003cli\u003eThe state provides comprehensive support for people with disabilities, but there is no specific support for people with aphasia due to a lack of awareness.\u003c/li\u003e\n \u003cli\u003eThere is no assistance with administrative tasks, taxes, or anything else that needs to be done online.\u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003e\u003cu\u003ePAOLI Phase III \u0026ndash; Translational Phase\u003c/u\u003e\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe third phase focused on translating the identified priorities into action. in French, Spanish, and English between September and October 2024. These meetings targeted the top two priority topics and aimed to explore practical initiatives for raising awareness and support.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eParticipation and Adherence\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe online meetings took place between September and October 2024 and were split into sessions by language. \u0026nbsp;Participation increased to more than 50 (19 in the English-speaking session, 8 in the French-speaking session, and up to 40 in the Spanish-speaking sessions). With this Language specificity and higher number of participants, discussion was richer, but the chairman had to more control time of speak of each participant, since PWA tended to talk longer. Moreover, summarising intervention was necessary to be sure that every participant could understand.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eProposed actions and disseminations\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e1. Actions for the Top Priority: \u003cem\u003eRaising Awareness of Aphasia in Society and the Family\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe participants collectively proposed a series of initiatives, including the following:\u003c/p\u003e\n\u003cul\u003e\n \u003cli\u003eA formal proposal to establish an annual AIA Aphasia Day, presented at the AIA General Assembly and fixed on October 20\u003csup\u003eth\u003c/sup\u003e. This event aims to support political and media advocacy for aphasia awareness.\u003c/li\u003e\n \u003cli\u003eGreater inclusion of PWA and regional associations in AIA activities can be facilitated by granting them the status of AIA Observers.\u003c/li\u003e\n \u003cli\u003eEncouraging testimonies from PWA at international conferences to promote real-life experiences and visibility.\u003c/li\u003e\n \u003cli\u003eThe development of aphasia-friendly educational campaigns through the collaborative efforts of AIA and LIHA members.\u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003e2. Actions for the Second Priority: \u003cem\u003ePsychological and Intimate Changes After Aphasia\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThis theme was addressed in November 2024 through the following initiatives:\u003c/p\u003e\n\u003cul\u003e\n \u003cli\u003eThree short online presentations were delivered by a stroke survivor and two psychologists living with aphasia. These talks highlighted:\u003cul\u003e\n \u003cli\u003eThe importance of personal agency, such as engagement in physical and social activities.\u003c/li\u003e\n \u003cli\u003eThe role of trust, resilience, and long-term psychological adjustment.\u003c/li\u003e\n \u003cli\u003eThe concept of \u0026quot;narrative reconstruction\u0026quot; as a therapeutic and identity-building strategy.\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/li\u003e\n \u003cli\u003eIn addition, further personal testimonies were shared at an international conference, contributing to the identification of practical support strategies and promoting dialogue between countries.\u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003e3. Next Steps: Dissemination\u003c/p\u003e\n\u003cp\u003eHealth professional expressed a strong interest in publishing the findings of this co-creation and priority-setting process in a specialized PPI peer-reviewed journal. This would support the broader dissemination of outcomes and advocacy for international collaboration in aphasia-focused initiatives.\u0026nbsp;PWA proposed to give courses and lived experiences testimonies in scientific meeting, and to create multilocal actions for the aphasia day in order to increase aphasia awareness.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe translational phase further emphasized the leadership role of PWA in shaping awareness and advocacy goals. By guiding dissemination priorities and proposing concrete actions, participants demonstrated that PPI in aphasia research can extend beyond consultation into sustained, empowered engagement.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cu\u003eMeasurement of PPI impact on the whole process\u0026nbsp;\u003c/u\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eEvolution of the participants to the Zoom meetings\u003c/em\u003e: \u0026nbsp;As mentioned in the adherence paragraphs of the results, the number of PWA was quite stable across the meetings (11 PWA participants at the first meeting, 10 at the voting meeting) but increased when language specific meetings were proposed during PAOLI phase 3. \u0026nbsp;In the meetings of September and October 2024, which were split into sessions by language, participation increased to more than 50 (19 in the English-speaking session, 8 in the French-speaking session, and up to 40 in the Spanish-speaking sessions). In the first meetings, some PWA participants reported difficulties with comprehension due to translation issues, despite the use of automatic translation tools.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eSelf-evaluation of the involvement by PWA co-authors:\u0026nbsp;\u003c/em\u003eThe involvement and self-ratings of the 8 PWA co-authors are presented in Table 3. Five co-authors were present and meaningfully involved in all phases of the project, while three were active in two of the three phases. Among the 8 PWA co-authors, 5 actively proposed topics, all participated in national voting, 7 took part in the final international voting, and all contributed to the dissemination phase. Three PWA co-authors presented the results of this study in a dedicated session at the 2025 European Stroke Forum, held in Prague in March 2025.\u003c/p\u003e\n\u003cp\u003eThe overall impact on decision-making was rated as \u0026ldquo;optimal\u0026rdquo; by 5 PWA co-authors and \u0026ldquo;good\u0026rdquo; by 3 (mean rating: 3.6 out of 4). While none of the PWA Co-authors wrote the manuscript, they were given explanations about how it was constructed and made efforts to read it as best as they could (i.e. the plain summary, and the part they felt important for them). It took them more than one week to read the manuscript. All PWA Co-authors felt satisfied with their feeling of being listened. Only 3 out of 8 felt they optimally understood the discussions, all other rated their comprehension as at least sufficient. All PWA co- authors approved the final manuscript. (See Table 3 for role and rating details).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 3.\u003c/strong\u003e Roles of co-authors with aphasia across the different phases of the process, and their self-ratings of effective participation\u003c/p\u003e\n\u003ctable border=\"0\" cellspacing=\"0\" cellpadding=\"0\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eAUTHORS (Maternal Language)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003ePRESENCE\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eROLE\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eSELF RATING OF IMPACT \u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eSELF RATING Of BEING LISTENED TO\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eCOMPREHENSION OF DISCUSSION\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eJS (Sl)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eAll phases\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eLead, welcome, Pr, NV, IV, A, AF\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e4*\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e3*\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e2\u0026rdquo; (Translation issues)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eCM (Fr)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eAll phases\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003ePr, NV, IV, A\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e3 (Translation issues)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eJG (Sp, E)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eAll phases\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003ePr. NV, IV, A\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e3\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eRS (G)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003ePhase 2, 3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eNV, IV, A,\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eCL I\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eAll phases\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003ePr, NV, IV, A\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eDC (I)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003ePhase 2, 3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eNV, A, D\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e2(Translation issues)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eHM (G, E)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003ePhase 2, 3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eNV, IV, D\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e4\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cem\u003eAK (Gr)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eAll phases\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003ePr. NV, IV, A, D\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e2*(Translation issues)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003eNote: Pr is Initial Proposal of Topics; AF = aphasia friendly communication; NV is national discussions and Vote; IV is international final vote of June 3\u003csup\u003erd\u003c/sup\u003e, 2024; A is presentations of Actions, D is Dissemination through presentations. \u0026nbsp;Rating is 0 to 4 1(0 = not at all; 1 = insufficient; 2 = sufficient, 3= good, 4 = very much). Languages: Sl = Slovenian; Fr = French; Sp = Spanish; E = English; I = Italian; G = German; Gr = Greek. * The rating for JS (deceased before manuscript submission) was evaluated by the two corresponding authors\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis study around aphasia research priorities presents a unique collaborative experience involving PWA, health professionals, and carers from 12 different countries to identify thematic priorities for individuals living with chronic aphasia. The methodology adhered to the PAOLI phases, encompassing co-design\u003csup\u003e4\u003c/sup\u003e and involved a structured, two-step Communication Process: digital Meetings for Global Exchange facilitated discussions among diverse international stakeholders, and local Decision-Making through National Meetings. The four primary topics identified were as follows: 1) raising awareness of aphasia in society/family, 2) psychological changes in aphasia, 3) self-confidence after aphasia, and 4) raising awareness of the need for speech therapy and hospital attitudes toward aphasia. Interestingly, the first three topics were not directly related to language impairment but rather to the social and personal consequences of this loss of communication efficacy. This initiative demonstrates that PWA can actively participate in, and lead, the identification of international research priorities when supported through inclusive and accessible methods\u003csup\u003e19\u003c/sup\u003e. A\u0026nbsp;defined number of PWA (8 of participating members) could fulfil the criteria of authorship as defined by the International Committee of Medical Journal Editors : substantial contributions to the conception or design of the study or data collection, analysis or interpretation; Writing the study or critical appraisal for important intellectual content; approval of the final version; accountability for all aspects of the study. To support residual language difficulties, certain PWA focused their critical review on select manuscript sections while all authors reviewed the entire document, employing up to one week. The study provides a concrete example of how PPI principles can be applied across multiple countries and languages, moving beyond consultation to coproduction.\u003c/p\u003e\n\u003cp\u003eOur results also suggest a significant PPI impact on the selection of priority topics compared to former studies\u0026nbsp;\u003csup\u003e20\u003c/sup\u003e, particularly in shaping research directions\u003csup\u003e11\u003c/sup\u003e. While members of AIA acknowledged and supported the importance of rehabilitation approaches and aphasia therapy, as well as psychological well-being (including the impact of aphasia), they also stressed the importance of aphasia awareness among families and society\u003csup\u003e11\u003c/sup\u003e discussed the topic of aphasia self-confidence and resilience in social relationships. \u0026nbsp;Particularly, awareness was seen as essential for improving communication performance and fostering greater understanding of communication impairments.\u003c/p\u003e\n\u003cp\u003eOne of the key points discussed in this study was adherence to meetings and voting. After the first meeting, adherence of PWA remained relatively stable throughout the process, and the number of participants even increased during phase 3, particularly after introducing language-specific sessions. This trend has also been reported in other patient organizations\u0026nbsp;\u003csup\u003e21\u003c/sup\u003e. While participation rates varied, the preservation of the initial PWA participants after 8 months, at the final international voting online meeting, demonstrates the feasibility of engaging PWA in sustained international co-creation processes\u0026nbsp;\u003csup\u003e22\u003c/sup\u003e, but also the need supporting them during the whole process.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe adherence of 83% to the voting itself among the PWA present at this specific meeting, confirms also the implication of their implication and active participation in the process, meantime suggest that they may jump out the active group if optimal conditions are set. Five of the eight PWA co-authors were active in all three phases of the process, and three presented their experiences and data at international conferences, together with layperson co-authors. Their involvement in the decision-making process was rated between good and optimal. Self-rating of \u0026ldquo;being listened to\u0026rdquo; was consistently reported as sufficient to optimal.\u003c/p\u003e\n\u003cp\u003eThe greatest challenge as in other PPI studies was stimulating participation at the beginning of the project\u003csup\u003e23\u003c/sup\u003e. Out of 21 AIA country members, only 12 took initially par to the project.t. Reported reasons included difficulties in mobilizing members for additional tasks, a decline in collaborative habits following the COVID-19 pandemic, and challenges for some PWA in accessing virtual meetings rather than in-person formats\u0026nbsp;\u003csup\u003e24\u003c/sup\u003e. Rather than viewing nonparticipation as a limitation, these challenges stresses the necessity to overcome specific barriers before initiating a research with PWA and reflect the need for continued development of flexible, accessible models of PPI suited to populations with communication differences\u003csup\u003e25\u003c/sup\u003e.\u0026nbsp;The fact that all authors, laypersons and PWA, participated on their free time and received no financial compensations, could also have prevented a larger implication in the project initiation.\u0026nbsp;The aim of this study was to report the barriers to becoming involved in research as patient partners for people with aphasia (However, participation in research questions is often even lower because of the excessive time taken for training activities and attendance, as well as discontinuity in involvement\u0026nbsp;\u003csup\u003e23\u003c/sup\u003e. Nonparticipation can be attributed to several practical factors, such as difficulties in attending meetings at fixed times due to the need to accommodate multiple time zones. For example, particularly in the initial phase, priority was given to PWA in South America and Europe so that Australia was invited at 3 AM, which was not possible. In the second and 3\u003csup\u003erd\u003c/sup\u003e phases, we could better distribute the timetables, particularly adapting them to the language used of the different discussion meetings (English, French or Spanish). Additionally, health-related issues, such as fatigue, particularly during afternoon meetings, contribute to nonattendance\u0026nbsp;\u003csup\u003e26\u003c/sup\u003e. We observed that, although difficult, trans-linguistic communication seems possible in the aphasic population, there must be a supportive and tailored environment\u0026nbsp;\u003csup\u003e27\u003c/sup\u003e, as is sometimes possible in aphasic urban communities. One of the authors (JMA) attempted to translate the messages into different languages. The recent development of artificial intelligence translation has involved the use of zoom digital tools. Some participants, despite being present, were unable to prepare adequate responses or arguments for discussions, especially if they had not been adequately coached or prepared in advance\u0026nbsp;\u003csup\u003e28\u003c/sup\u003e. This challenge aligns with other studies highlighting the varying abilities of PWA to participate actively in discussions, depending on their level of aphasia severity and prior experience in academic settings\u0026nbsp;\u003csup\u003e26\u003c/sup\u003e. Patients may be more active in proposing research ideas than in proposing priorities and data analyses\u0026nbsp;\u003csup\u003e28\u003c/sup\u003e. Participants with mild to moderate chronic aphasia were generally able to contribute meaningfully, particularly during semi-structured discussions.\u003c/p\u003e\n\u003cp\u003eFrom a logistical perspective, national associations face challenges in securing appropriate structures and funding to support onsite meetings. However, several groups preferred online meetings, which were more cost-effective and flexible. Notably, participants with experience in PPI research emphasized the importance of building relationship before meetings through one-on-one introductions, short sessions, and regular breaks. In our experience, meetings lasting 1.5 hours with a 10-minute break in the middle were optimal for in-person meetings, whereas 60-minute sessions were optimal for online meetings, demonstrating that higher fatigue levels in aphasia tend to decrease social participation\u0026nbsp;\u003csup\u003e29\u003c/sup\u003e. Participants with aphasia usually mention difficulties during meetings, such as ignoring background noise, controlling negative emotional reactions, focusing, slowing down/taking breaks\u0026nbsp;\u003csup\u003e30\u003c/sup\u003e, and possibly necessitating specific training before digital meetings. Several strategies have been employed to address these challenges. For example, a speaking participant (RS) prepared written comments on psychological changes following aphasia, employing approximately 90 hours to prepare his 7 minutes\u0026rsquo; intervention. Another participant, preparing for a presentation at the Prague European Life After Stroke Forum (ELASF) by the Stroke Alliance for Europe, rehearsed her talk 30 times to ensure that it fit within the allocated 10-minute timeframe.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eThematic Priorities: Aphasia Awareness and Psychological Issues\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe first thematic priority, \u0026lsquo;raising awareness of aphasia\u0026rsquo;, was particularly emphasized by two-thirds of the participating countries. This focus reflects the widespread issue of low aphasia awareness, with studies consistently reporting that fewer than 20% of the general population, including many health professionals, is familiar with aphasia. As reported by the PWA, poor awareness itself was not considered a problem but may have disastrous consequences. First, it decreases knowledge of the consequences for the self-esteem of PWA and prevents strategies to improve communication. Improving aphasia awareness and effective communication resources also improves the environment\u0026rsquo;s confidence in supporting communication and the effectiveness of their interaction\u0026nbsp;\u003csup\u003e27\u003c/sup\u003e. Recent studies concluded that \u0026quot;aphasia awareness\u0026quot;, as seen by PWA, involves understanding that aphasia does not affect intelligence and insists on the importance of communicating effectively with someone with aphasia\u0026nbsp;\u003csup\u003e31\u003c/sup\u003e. These points were frequently highlighted during the group discussions, underscoring the need for public education and training in aphasia communication strategies. The proposal to create an Aphasia International Day by voting has been followed to find a moment where the international community can coordinate some specific actions. Even if there are many national days, weeks, or months of aphasia, it may be fruitful to have a specific moment for joint action. The co-created priorities emerging from this study illustrate that when people with aphasia are empowered to shape research agendas, they face psychosocial and environmental issues that may be underemphasized in clinically driven research. This underlines the value of sustained, inclusive PPI approaches in aphasia and stroke care.\u003c/p\u003e\n\u003cp\u003eThe second priority, \u0026lsquo;psychological changes associated with aphasia\u0026rsquo;, was also discussed in depth given the high frequency of mood disorders associated with aphasia\u003csup\u003e32\u003c/sup\u003e.\u0026nbsp;In fact, PWA are less likely to have their mood assessed after stroke (23% versus 30% in stroke patients without aphasia) but, when evaluated, show higher mood impairment assessed (38% versus 28%)\u0026nbsp;\u003csup\u003e33\u003c/sup\u003e.\u0026nbsp;The specific psychological guidelines addressing long term emotional disturbances in patients with aphasia reflects a gap in clinical practice. Specific therapy manual for Support in Mental health, in person or via telehealth, like the one proposed by the Aphasia PRISM program, will offer precious cues of intervention during the acute phase\u003csup\u003e34\u003c/sup\u003e. While some systematic studies have explored interventions for diagnosed mood disorders, their efficacy is generally limited to mild depression, with less success in addressing moderate or severe depression\u0026nbsp;\u003csup\u003e35\u003c/sup\u003e. Such psychological changes may often lead to suicidal ideations, which may be unnoticed in persons with communication disorders, and aphasia is also perceived by professionals as a barrier to assessment and intervention for suicidality\u0026nbsp;\u003csup\u003e36\u003c/sup\u003e.\u003c/p\u003e\n\u003cp\u003eDespite repeated efforts to develop comprehensive assessment scales for the psychological aspects of PWA patients, such scales seem to be surprisingly absent in the literature\u0026nbsp;\u003csup\u003e37\u003c/sup\u003e. Rehabilitation interventions such as goal setting, psychosocial support, communication partner training, and narrative therapy have been found to be beneficial, but these areas may be underprioritized by caregivers. Competence in both suicidality- and aphasia-friendly communication strategies should be improved in stroke care and rehabilitation\u0026nbsp;\u003csup\u003e36\u003c/sup\u003e, including participation in meaningful and accessible nonverbal activities\u0026nbsp;\u003csup\u003e38\u003c/sup\u003e (see, for example, for personal reflection of RS in Appendix 2).\u003c/p\u003e\n\u003cp\u003eMoreover, specific social networking inside community groups for PWA, including contact with psychologists with aphasia, seems to contribute to awareness of psychological changes, exploiting personal experiences as professionals, and offering valuable insights into the psychological aspects of living with aphasia. One health professional participant (JG) emphasized the importance of narrative frameworks for understanding aphasia: the chaos narrative (characterized by a loss of hope), the restitution narrative (focused on recovery), and the quest narrative (viewing illness as an opportunity for growth). This framework seems to help the spontaneous rebirth of PWA\u0026nbsp;\u003csup\u003e39\u003c/sup\u003e. Another psychologist of the group (CM) has insisted on the trust of the PWA mourning process to find a new \u0026ldquo;self\u0026rdquo; and project\u0026nbsp;\u003csup\u003e40\u003c/sup\u003e. These frameworks resonated with participants and contributed to a broader understanding of the psychological impact of aphasia.\u003c/p\u003e\n\u003cp\u003eThe topic of \u0026lsquo;intimacy and sexual relationships\u0026rsquo; also emerged, with younger participants more actively contributing to the discussion. There were diverging opinions on the relevance of this issue, with some individuals in stable marital relationships feeling that it was less important, whereas those without partners argued for its inclusion in the aphasia community discourse, both in terms of sexuality and self-knowledge. Research has shown that acquired communication impairments can negatively affect sexuality; however, this topic is seldom addressed in communication disorder research\u0026nbsp;\u003csup\u003e41\u003c/sup\u003e. This gap suggests that incorporating discussions of intimacy and sexuality into aphasia-related care would be beneficial.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eLanguage barriers and technological solutions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAn additional challenge discussed was the language barrier in international meetings. While English was chosen as the common language for communication, participants who were nonnative English speakers, particularly those from French- and Spanish-speaking countries, required simultaneous translation. This added complexity and time to discussions, but technological solutions, such as artificial intelligence (AI)-driven translation tools, were introduced to facilitate communication. While these tools were effective for participants who understood written language, they significantly enhanced the inclusivity of the discussions, allowing for more authentic exchanges. The success of AI-based tools and multilingual facilitation in this study shows that technology can enable, not hinder, participatory research with people who have communication needs. This is particularly relevant as PPI expands into global, multilingual settings.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eLimitations\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eA key limitation of this study is the\u0026nbsp;63\u0026nbsp;% participation rate to the first meeting, ac, which could be due to logistical challenges such as time zone differences, health issues, or lack of preparation. Some PWA participants struggled to engage meaningfully in discussions, especially those with more severe aphasia. One example was ZG, from the Hungarian expert group, with a very low expressive capacity (rated severity 2 on ASRS) who could only express themselves through a therapist who helped him through the process (FE). Future studies could address these issues by offering more flexible schedules, preparatory sessions, and support for participants with varying degrees of aphasia severity. Additionally, language barriers pose challenges, particularly for non-English speakers. While translation efforts helped, they extended meeting times and may have hindered engagement. Future research could benefit from advanced multilingual tools to facilitate communication. Additionally, the study\u0026rsquo;s narrow focus on four thematic priorities may have overlooked other important issues, such as employment or social participation. Future studies should broaden the scope to include these areas. Notably, these limitations reflect broader systemic challenges in operationalizing inclusive PPI, especially across linguistic, cultural, and cognitive differences. Nonetheless, the ability of many participants with aphasia to contribute actively, even across these barriers, demonstrates the viability of inclusive international research coproduction.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFuture Directions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eFuture research should focus on increasing participation by offering flexible meeting times or asynchronous participation options. Tailored communication support and induction sessions could also improve meaningful involvement. Addressing language barriers through better multilingual tools or providing dedicated translators for each group would enhance inclusivity. Furthermore, studies should include a broader range of themes, such as the impact of aphasia on employment and social relationships, to provide a more comprehensive understanding of PWA\u0026rsquo;s needs. Evaluating the effectiveness of aphasia awareness campaigns and training programs for healthcare professionals would also provide valuable insights for improving aphasia care across different cultural and regional contexts. This project offers a scalable, replicable model for embedding PPI into international aphasia research. Finally, future work should explore how cocreated research priorities influence funding decisions, policy development, and clinical innovation.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eDespite the complexities of coordinating a multilingual, international, and inclusive PPI initiative, participation throughout the process was strong, and the engagement of PWA was both active and meaningful. The high quality of discussions reflected the impact of accessible materials, careful preparation, and sustained support. The priorities identified, ranging from societal awareness and emotional well-being to intimacy and therapy access, highlighted the psychosocial realities of living with chronic aphasia and the need for person-centred rehabilitation. The study also revealed a widespread desire for reassurance about personal competence and the availability of quality, ongoing aphasia care. Crucially, the project moved beyond discussion to real-world action, including the proposal of an International Aphasia Awareness Day, public education campaigns, and training initiatives for the wider community. These outcomes exemplify what is possible when PWA are not only included but also empowered to cocreate research. Above all, this work reinforces that PWA are not just capable contributors; they are essential partners in shaping the future of aphasia research and services. The multilingual, cross-national, and coproduced nature of this study offers a replicable model for inclusive, impactful research in aphasia and related fields. \u0026nbsp;\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003ePPI: Patient and Public Involvement; PWA: People with Aphasia; GRIPP: Guidance for Reporting Involvement of Patients and the Public; PAOLI: People with Aphasia and Other LayPerson Involvement; ASRS: Aphasia Severity Rating Scale; BDAE: Boston Diagnostic Aphasia Examination\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe acknowledge all members of the Expert group, particularly Zolt\u0026aacute;n G\u0026aacute;sp\u0026aacute;r and Beatriz Gonz\u0026aacute;lez Ortu\u0026ntilde;o for their effective presence and participation in the discussion. We also honor with deep sorrow our co-author Jernej Sluga, president of Aphasia International Association and Slovenian disability rights champion, who initiated and participated to this work and died unexpectedly in June 2025.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of Data and Material\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe data generated during the current study and support the conclusions of this article. Any further data queries and requests should be submitted to the corresponding author, Prof Jean-Marie Annonie MD PhD, for consideration.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthical Approval\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe study was conducted online and internationally; it received ethics approval for conduct from the Cyprus Bioethics Committee institution of the second corresponding authors: CNBC EP 2023.01.02\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAuthors and members of the Expert group participated in the discussions and the voting and wanted to have the results of their votes published. All authors and experts group gave consent to participate in the manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eConsent for publication\u003c/em\u003e: All authors and the experts group gave consent for publication to the manuscript, including JS, who gave his consent for publication before his Passing.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors have no competing interests as defined by BMC, or other interests that might be perceived to influence the results and/or discussion reported in this paper.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for Publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThere was neither external nor internal funding, except for au support of 400 Euros to JS and HM for participation in an in-presence meeting. \u0026nbsp;\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026apos; contributions\u003c/strong\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eConcerning the role of the authors, SR, JMA, MC and JS initiated the project and organized the meetings. All authors participated actively in the meetings and proposed the initial 12 topics. \u0026nbsp;CM, JS, JG, FE, CL, DC, AK, HM, JMA, MC and SR \u0026nbsp; organized voting and/or voted across countries and contacted the members of the expert group. JMA and FE provided meetings summaries, JMA and MC wrote the main manuscript text, and prepared figures. CB edited the manuscript and corrected two paragraphs in the discussion. CM and JG participated in the discussion on psychological consequences. All authors reviewed the manuscript.\u0026nbsp;\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eMc Menamin, R., Isaksen, J., Manning, M. \u0026amp; Tierney, E. Distinctions and blurred boundaries between qualitative approaches and public and patient involvement (PPI) in research. \u003cem\u003eInt. J. Speech Lang. 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Disord.\u003c/em\u003e \u003cstrong\u003e60\u003c/strong\u003e, e70023 (2025).\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"research-involvement-and-engagement","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"riae","sideBox":"Learn more about [Research Involvement and Engagement](http://researchinvolvement.biomedcentral.com/)","snPcode":"40900","submissionUrl":"https://submission.nature.com/new-submission/40900/3","title":"Research Involvement and Engagement","twitterHandle":"@MedicalEvidence","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"aphasia, stroke, patient and public involvement, patient experience, topics, awareness","lastPublishedDoi":"10.21203/rs.3.rs-7344409/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7344409/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cem\u003eBackground\u003c/em\u003e: 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.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eAim\u003c/em\u003e: 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.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eMethods\u003c/em\u003e: 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.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eResults\u003c/em\u003e: 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.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eConclusion\u003c/em\u003e: 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.\u003c/p\u003e","manuscriptTitle":"A Global Multilingual Co-Creation of Aphasia Topics Priorities through Patient and Public Involvement","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-09-17 08:35:22","doi":"10.21203/rs.3.rs-7344409/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2025-11-13T09:22:49+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-11-10T22:52:43+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-10-29T04:42:01+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-10-25T16:18:13+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"190515428838106083302557208928938270887","date":"2025-10-21T13:09:17+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"295234969586812719539802544758684696023","date":"2025-10-20T21:23:38+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"184411724488710013629965164135076225036","date":"2025-10-10T10:06:49+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"244041328419348707321893293690258475960","date":"2025-10-03T04:27:50+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"215723912164060672466807967345106435789","date":"2025-09-22T22:16:46+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"190515428838106083302557208928938270887","date":"2025-09-09T14:01:29+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-09-09T07:17:09+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-09-09T04:46:29+00:00","index":"","fulltext":""},{"type":"submitted","content":"Research Involvement and Engagement","date":"2025-09-08T17:26:32+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"research-involvement-and-engagement","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"riae","sideBox":"Learn more about [Research Involvement and Engagement](http://researchinvolvement.biomedcentral.com/)","snPcode":"40900","submissionUrl":"https://submission.nature.com/new-submission/40900/3","title":"Research Involvement and Engagement","twitterHandle":"@MedicalEvidence","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"a4d5c17c-0514-4062-8ae5-ae6df3c4d5e0","owner":[],"postedDate":"September 17th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2026-05-22T16:39:33+00:00","versionOfRecord":[],"versionCreatedAt":"2025-09-17 08:35:22","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-7344409","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7344409","identity":"rs-7344409","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}