An international cross-sectional study of dementia researchers’ own perspectives on patient and public involvement

TL;DR

This study examines how dementia researchers from different regions view patient and public involvement in research, finding regional differences in awareness and use.

Contribution

The study identifies regional disparities in dementia researchers' familiarity with and use of patient and public involvement (PPI) in research.

Findings

Researchers in Europe, the USA, and Canada reported greater familiarity with PPI than those in Latin America.

Lower PPI knowledge was reported by Latin American participants, who also more often declined to answer about PPI's role.

Familiarity with PPI was linked to more research experience, grant applications, and better access to PPI groups.

Abstract

Patient and Public Involvement (PPI) can enhance the quality and relevance of health research. However, its implementation remains uneven across regions and research fields. This study explores how dementia and aging researchers perceive PPI’s impact on their work. A cross-sectional survey was distributed to 392 researchers in Europe, Latin America, the USA, and Canada. Following multiple expert reviews, native speaker input, and pilot testing, the final survey was administered. Quantitative data were analyzed using descriptive statistics, group comparisons, and logistic regression models. Of 392 questionnaires, 91 were returned (23.2% response rate). Researchers in Europe, the USA, and Canada reported greater familiarity with PPI than those in Latin America. Notably, 45.1% of respondents selected “I prefer not to answer” when asked about PPI’s role in their research; this was more common among Latin American participants, who also reported lower PPI knowledge. Logistic regression revealed that familiarity with PPI was associated with having more research experience, submitting more grant applications, better access to PPI groups, and using PPI to aid recruitment. These findings point to gaps in the awareness and application of PPI in aging and dementia research, with many researchers expressing uncertainty about its value. Regional disparities underscore the need for consistent, standardized approaches to PPI. Future efforts should focus on closing the gap between theoretical familiarity and active implementation to improve research quality and public engagement, particularly in under-resourced settings.

The online version contains supplementary material available at 10.1038/s41598-025-33955-y.

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