Introduction: Global disparities in neurosurgical care lead to preventable morbidity and mortality, especially in low- and middle-income countries (LMICs) where the burden of disease outpaces neurosurgical capacity. The role of patient support and advocacy organizations in expanding access to neurosurgical care worldwide remains underexplored. Stakeholder analysis offers a strategic framework for understanding who these groups are and how they have contributed to global neurosurgery.
Methods: We conducted a stakeholder and geospatial analysis to evaluate the influence of patient support and advocacy groups on global neurosurgery initiatives from 2014 to 2024. Using traditional and AI-assisted searches, we identified organizations from around the world that impacted health policy, funding, awareness, or education about global neurosurgical needs. Data were collected from organization websites and public sources, ensuring a diverse global perspective that included LMIC organizations. Key stakeholder organizations were classified by neurosurgical subspecialty and geographic region, and their impact was qualitatively assessed.
Results: Ninety-four patient organizations met the inclusion criteria and were categorized by neurosurgical subspecialty: functional neurosurgery (n=18, 19.1%), pediatric neurosurgery (n=19, 20.2%), neurotrauma and injury (n=9, 9.6%), tumor-related conditions (n=38, 40.4%), cerebrovascular conditions (n=6, 6.4%), and general neurosurgery (n=4, 4.3%). The majority were based in high-income countries (n=79, 84.0%), predominantly from the USA (n=59, 62.8%), UK (n=7, 7.4%), and New Zealand (n=4, 4.3%). Fifteen organizations (16.0%) were from LMICs, with representation from upper-middle income (n=7, 7.4%), lower-middle income (n=7, 7.4%), and low-income countries (n=1, 1.1%). Patient organizations have significantly influenced global neurosurgery by advocating for policy changes, securing essential funding, and advancing research and education, helping to drive progress in improving patient outcomes and care standards worldwide. Organizations in LMIC settings provide crucial localized support by enhancing community awareness of neurosurgical conditions like epilepsy and brain tumors and advocating for improved access to necessary treatments.
Conclusion : This stakeholder analysis identifies the critical contributions of patient support and advocacy organizations in global neurosurgery. These findings highlight opportunities for collaboration and alignment among diverse stakeholders to promote accessible neurosurgical care and build healthcare capacity worldwide.
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