Description
Background: Sickle Cell Disease (SCD) stands as a symbol of the complex interplay between genetic, environmental, social, and healthcare system factors, especially pronounced in regions like sub-Saharan Africa and LMICs where it remains a highly neglected global health issue. High morbidity and early mortality rates worldwide highlight the urgent need for innovative approaches to SCD integrated care. Inspired by the vision of SwissNeuroRehab project for setting up an innovative model of neurological rehabilitation, we propose an interoperable digital health data space, aiming to transform SCD management worldwide and bridge the existing care gap.
Introduction: SCD's disproportionate impact in LMICs, marked by underdeveloped clinical frameworks and significant data deficiencies, impedes effective diagnosis and management. Disease mortality in children younger than 5 years ranks 12th across all causes estimated by the Global Burden of Diseases. Recognizing the World Health Organization's call to action, our initiative seeks to provide a comprehensive, user-centric digital platform, modeled after SwissNeuroRehab's citizen-driven design approach, to foster global health equity in SCD treatment.
Methodology: Adapting the SwissNeuroRehab framework, our methodology involves the development of a secure, privacy-preserving, and interoperable digital health data space for SCD. This innovative platform is designed for seamless data collection and analysis, encompassing patient health data, electronic patient records, and digital therapeutics. Guided by the Consolidated Framework for Implementation Research (CFIR), aligning with international standards like HL7 FHIR and SNOMED-CT for global adaptability, and extending beyond FAIR data principles, our approach integrates the Rawlsian principles of justice written in Switzerland’s Constitution, securing a “leave no one behind” approach when designing the platform.
Expected Results: The platform is poised to revolutionize SCD management by generating comprehensive data sets aligned on answering patient’s most important needs of resiliency towards life adversity, encompassing a minimal data set of clinical assessments, patient-reported outcomes, patient-reported experiences measures, and digital therapeutics. This will enhance tele-rehabilitation, optimize clinical pathways, and personalize health interventions. By enabling caregivers, healthcare providers, and patients to track progress effectively, the platform promises to facilitate informed decision-making throughout the Continuum of Care (CoC).
Discussion: The implementation of this digital health data space in SCD management marks a significant stride towards mitigating global disparities in health outcomes. By amplifying the voices of forgotten patients and their communities and by harnessing cutting-edge but robust technologies, our SwissNeuroRehab-derived approach addresses challenges of data incompatibility, privacy concerns, and standardization. This initiative aligns with the emerging demands of precision medicine and presents a scalable model suitable for diverse global settings.
Conclusion: The proposed framework, drawing inspiration from the SwissNeuroRehab model, represents an innovative and much-needed approach to tackling SCD, a long-neglected global health issue. It demonstrates how technology can be leveraged to achieve health equity, offering a sustainable, equitable, and cost-effective healthcare solution. This framework not only promises to enhance the quality of care for SCD patients globally but also sets a new precedent for addressing other complex diseases, paving the way for a more equitable and integrated global health system. This research was funded by INNOSUISSE, grant number PFFS-21-64”.
| Contact Geneva Health Forum | I would like to receive information about the GHF 2024 conference and other GHF activities / Je souhaite recevoir des informations sur la conférence GHF 2024 et d'autres activités du GHF. |
|---|
