"Mapping Stakeholder Engagement in Endometriosis Care Innovation: Insights from the VendoR Project"
Mahdikhani, S.; Cleary, F.; Cummins, S.
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Objectives: Endometriosis affects approximately 10% of reproductive age women worldwide, yet care pathways remain fragmented and treatments have limitations. This study aimed to identify and categorize key stakeholders in endometriosis care in Ireland, assess their influence and interest in the digital health initiative, and identify drivers and barriers affecting uptake of innovative approaches to care. Methods: A virtual stakeholder mapping workshop was conducted with participants from healthcare, policy, education, technology, academia, and patient communities. Using a structured MS Teams Whiteboard, participants generated a stakeholder list, positioned stakeholders on an Influence-Interest Matrix, and provided qualitative insights on factors enabling or constraining engagement with digital health innovation. Results: Stakeholders were distributed across all four quadrants of the matrix. High-interest/high-influence stakeholders included the HSE, specialist centres, general practitioners, and the Endometriosis Association of Ireland. High-interest/low-influence groups comprised patients, families, and online communities, while policymakers, hospital managers, and the education sector were identified as high-influence but low-interest actors. Key drivers included strong patient advocacy, institutional support such as engagement from the HSE, and growing awareness of digital health tools. Major barriers encompassed prolonged diagnostic delays, resource constraints, gaps in clinical knowledge, technology anxiety, and challenges sustaining engagement. Conclusions: Stakeholder mapping provided an evidence-informed foundation for the VendoR project, revealing engagement gaps and leverage points critical for improving endometriosis care innovation. The findings highlight the need for intentional, well-resourced strategies that elevate patient voices, address systemic barriers, and ensure balanced representation, supporting the co-design, co-creation, and co-production of digital health interventions for sustainable, patient-centred care.
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