Implementation of a knowledge management model to support health education and awareness processes in the context of rare diseases

• Grant number: 24/06751-2
• Support Opportunities: Scholarships in Brazil - Post-Doctoral
• Start date: June 01, 2024
• End date: May 31, 2026
• Field of knowledge: Health Sciences - Collective Health - Public Health
• Principal Investigator: Domingos Alves
• Grantee: Diego Bettiol Yamada
• Host Institution: Faculdade de Medicina de Ribeirão Preto (FMRP). Universidade de São Paulo (USP). Ribeirão Preto , SP, Brazil
• Associated research grant: 23/10203-8 - Promoting Comprehensive Care for People with Rare Diseases: Strengthening the Care, Registration and Awareness Network at Hospital das Clínicas in Ribeirão Preto, AP.PP

Abstract

According to the recommendations of the World Health Organization and the Ministry ofBrazilian Health, health education and awareness are fundamental processesdeterminants for the success of public health promotion strategies. MainlyIn relation to rare diseases, these actions are necessary and relevant, given the existence ofstigmas and discrimination in this context. Currently, many international initiativestake actions to address these obstacles. In Brazil, despite the institutionalization ofNational Policy for Comprehensive Care for People with Rare Diseases in 2014, the actionsregarding health education and awareness are not always transparent, as well asstructured and efficient in practice, making it difficult to comply with established rightsby the constitution. Additionally, studies show that, despite health curriculaare overloaded, it is necessary to complement teaching by proposing strategies andeducational objectives about rare diseases in an attractive and innovative way. In this scenario, theKnowledge Management plays a fundamental role as a set of technologies,methods and procedures to improve the organization, dissemination, use and generation ofknowledge in organizations with high managerial complexity. A management plan forKnowledge suited to the organization's needs allows for the allocation of resourcesefficiency, better levels of excellence in service provision, and greater customer satisfactionpatient. Therefore, this project's main objective is to apply a management modelof Knowledge within the academic health complex of the Hospital das Clínicas daFaculty of Medicine of Ribeirão Preto, University of São Paulo. This will be carried outthrough robust scientific methods focused on results for the benefit of the citizen, useof consistent information technologies and internationally validated standards, alignedwith the National Policy for Comprehensive Care for People with Rare Diseases. (AU)