{
  "abstract": "Background 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.Objective 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.Methods 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.Results 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.Conclusions 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.",
  "authors": [
    {
      "affiliations": [
        "Department of Surgery, Erasmus University Medical Center, Rotterdam, The Netherlands",
        "Dutch Institute for Clinical Auditing, Leiden, The Netherlands",
        "Department of Surgery, Catharina Hospital, Eindhoven, The Netherlands",
        "Department of Electrical Engineering, Eindhoven University of Technology, Eindhoven, The Netherlands"
      ],
      "name": "Lars van de Sanden"
    },
    {
      "affiliations": [
        "Dutch Institute for Clinical Auditing, Leiden, The Netherlands"
      ],
      "name": "Jacqueline ter Stege"
    },
    {
      "affiliations": [
        "Dutch Institute for Clinical Auditing, Leiden, The Netherlands",
        "Department of Anaesthesiology, Erasmus University Medical Center, Rotterdam, The Netherlands"
      ],
      "name": "Jitske Tiemensma"
    },
    {
      "affiliations": [
        "Netherlands Patients Federation, Utrecht, The Netherlands"
      ],
      "name": "Dominique Sprengers"
    },
    {
      "affiliations": [
        "SPKS Living with Esophagogastric Cancer, Utrecht, The Netherlands",
        "Department of Primary and Community Care, Radboud University Medical Centre, Nijmegen, The Netherlands"
      ],
      "name": "Liesbeth M Timmermans"
    },
    {
      "affiliations": [
        "Department of Surgery, Catharina Hospital, Eindhoven, The Netherlands",
        "Department of Electrical Engineering, Eindhoven University of Technology, Eindhoven, The Netherlands"
      ],
      "name": "Misha D P Luyer"
    },
    {
      "affiliations": [
        "Dutch Institute for Clinical Auditing, Leiden, The Netherlands"
      ],
      "name": "Mira S Staphorst"
    }
  ],
  "title": "Bridging perspectives: experiences and future directions for patient involvement in clinical registries – a survey-based study",
  "uid": "34c0b513-82ac-569c-a8f2-5d3f2df274f3"
}