Patient-Centered Leadership and Co-Design of Services for Breast Cancer Program in Nicaragua

TL;DR

Breast cancer patients in Nicaragua were involved in co-designing healthcare services, leading to improved care and outcomes.

Contribution

Formally integrating breast cancer patients into leadership roles and co-design initiatives to enhance care delivery.

Findings

97% of patients received their first oncology evaluation within 48 hours.

Early-stage breast cancer diagnoses increased from 67% to 76%.

No new cases of clinical depression were reported among support group participants over two years.

Abstract

Introduction: The direct participation and leadership of breast cancer patients in program design and implementation can facilitate a nuanced understanding of how individuals perceive and address challenges within their unique contexts. To achieve truly patient-centered care, patients must be formally integrated as a critical component of multidisciplinary healthcare teams. Materials and Methods: A descriptive, retrospective observational study was conducted. A group of 122 patients (“Breast Unit”) was formed and actively implemented initiatives related to education, prevention, peer support, co-design, and institutional guidance over two years. A second group, consisting of 466 individuals diagnosed with and treated for breast cancer, served as the Beneficiary Patient group. From the “Breast Unit”, 93 patients responded to a structured interview about their experience. Results: The Breast Unit group developed strong leadership skills and collaborated with the multidisciplinary healthcare team to improve care workflows, contributing at both strategic and operational levels. In total, 97% of patients received their first oncology evaluation within 48 h, ensuring timely intervention. The percentage of early-stage breast cancer diagnoses improved, from 67% to 76%. Furthermore, patients who participated in the support group reported no new diagnoses of clinical depression in the past two years. Conclusions: By elevating the patient voice into a substantive role within leadership, strategic planning, and co-design initiatives, healthcare systems can advance a more equitable, effective, and sustainable model of care. Integrating patient contributions with multidisciplinary collaboration is essential for optimizing care processes, improving clinical outcomes. It strengthens the person-centered culture, impacting on a personal and organizational level.

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