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Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
Patients and Communities Shape Regional Health Research Priorities: A Participatory Study from South Tyrol, Italy
Christian J Wiedermann1, Verena Barbieri1, Angelika Mahlknecht1
1Institute of General Practice and Public Health, Claudiana College of Health Professions, 39100 Bolzano, Italy.
Abstract:
Background/Objectives: Engaging patients, caregivers, and community groups in health research priority-setting ensures that research agendas reflect genuine needs and enhance patient-centered care. Regions with cultural and linguistic diversity, such as South Tyrol in northern Italy, face challenges in achieving fair representation. This study aimed to identify health services research priorities in South Tyrol, a culturally and linguistically diverse region in Italy, through a bilingual participatory survey involving general practitioners (GPs) and patient and social interest organizations (PSIOs). Methods: A cross-sectional online survey (August-September 2025) was conducted among invited PSIOs (n = 64) and regional GPs (n = 290). A bilingual, self-developed questionnaire assessed organizational characteristics, priority ratings for predefined topics, experiences with research participation, and preferred participation modes. The data were analyzed descriptively. Group comparisons were performed using the Mann-Whitney U and chi-square tests with effect size calculation. Associations were examined using Spearman's correlation. Free-text responses were thematically content-coded. Results: Ninety-five responses were analyzed, including nine general practitioners (9.5%) and 86 participants (90.5%) from patient and social interest organizations, of whom 27 (28.4%) held leadership or board positions. Across all groups, the highest-rated research priorities included children and adolescent mental health, palliative and end-of-life care, and continuity of primary care. Willingness to participate in future research was expressed by 38% of the respondents, with an additional 52% indicating conditional interest. Online surveys were the most preferred mode of participation, followed by workshops and board meetings. Conclusions: Participatory bilingual approaches are feasible in South Tyrol and highlight priorities that are highly relevant for patient-centered health services. Future initiatives should strengthen the structures for research participation, enhance GP engagement, and link identified priorities to research funding and policy action.
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