Bridging perspectives: experiences and future directions for patient involvement in clinical registries - a...

In the Netherlands, patient participation is mandatory in clinical registries. However, the practical implementation of this requirement remains unclear, and collaboration between patient representatives, chairs of Clinical Audit Boards (CABs) and registry coordinators has not been examined from a multistakeholder perspective.

To explore experiences, perceptions and needs regarding collaboration between patient representatives, CAB chairs and registry coordinators and to identify strategies to strengthen patient participation in clinical registries.

An online survey across 26 clinical registries was distributed in 2025 to three stakeholder groups: patient representatives, chairs of CABs and registry coordinators from the Dutch Institute for Clinical Auditing. The questionnaire assessed frequency and quality of collaboration, perceived value of patient input, challenges and improvement needs. Responses were analysed using descriptive statistics and thematic analysis.

48 respondents participated. Overall, attitudes towards patient participation were positive. CAB chairs expressed the most favourable views on collaboration, whereas registry coordinators reported more mixed experiences, reflecting their intermediary role between governance and daily operational practice. Key challenges included limited structural clarity and role definition, methodological complexity of indicator development and data interpretation, questions of representativeness and differences between patient-identified priorities and registry requirements. Across all groups, there was a strong call for improved onboarding, training and more structured and consistent engagement.

Although patient participation in clinical registries is formally established, experiences with its implementation vary widely across stakeholder groups. Strengthening structural support, mutual understanding and feedback mechanisms is essential to move from symbolic to substantive participation. Developing and evaluating a structured framework for patient engagement in clinical registries may enhance the contribution of these registries to learning, quality improvement and shared decision-making in clinical practice.