Patients and Communities Shape Regional Health Research Priorities: A Participatory Study from South Tyrol, Italy

TL;DR

A participatory study in South Tyrol, Italy, found that community priorities for health research include mental health, primary care trust, and palliative care, with limited GP involvement.

Contribution

The study demonstrates a participatory bilingual approach to identify region-specific health research priorities in a culturally diverse setting.

Findings

Top regional health priorities include mental health of children, continuity in primary care, and patient-oriented palliative care.

General practitioners were underrepresented in the research priority-setting process.

Online surveys were the preferred method for community participation in health research.

Abstract

What are the main findings?
Patient and social interest organizations identified research on the mental health of children and adolescents, continuity and trust in primary care, and patient-oriented palliative and end-of-life care as the top regional health services research priorities.General practitioners participated only marginally in regional health service research priority setting.

Patient and social interest organizations identified research on the mental health of children and adolescents, continuity and trust in primary care, and patient-oriented palliative and end-of-life care as the top regional health services research priorities.

General practitioners participated only marginally in regional health service research priority setting.

What is the implication of the main findings?
Regional health research agendas should incorporate community-driven priorities to ensure their relevance and uptake.Strategies are needed to improve general practitioner engagement in regional health services research to complement the active participation of patients and social organizations.

Regional health research agendas should incorporate community-driven priorities to ensure their relevance and uptake.

Strategies are needed to improve general practitioner engagement in regional health services research to complement the active participation of patients and social organizations.

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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