Plataforma RevELA: uma solução de saúde digital para a gestão do cuidado e vigilância dos pacientes com Esclerose Lateral Amiotrófica no Brasil

Abstract

Amyotrophic Lateral Sclerosis (ALS) is a rare neurodegenerative disease considered complex due to its heterogeneity. Despite being known for many years, few countries have accurate information about its epidemiology and the characteristics of individuals diagnosed with ALS. In Brazil, the lack of knowledge about ALS limits the use of data to advance research and develop public policies that favor people affected by this health condition. In this sense, this thesis aims to present the development of a digital health solution for care management and monitoring of ALS disease in Brazil in order to provide health surveillance with valuable and timely information to support the formulation of public policies and, at the same time qualify and improve the follow-up care for patients with ALS. This work was guided by action research methodology, and all phases of platform development were carried out sequentially in several cycles through the application of the iterative and incremental model using the SCRUM framework. The development of this solution had the support of the Brazilian Ministry of Health and was designed in response to the needs identified in the epidemiological scenario related to the disease, as well as the limitations reported by health professionals specialized in caring for patients with ALS. The solution developed is composed of two platforms: the Brazilian National ALS Registry, responsible for collecting epidemiological data from ALS patients throughout Brazil in a structured manner, and the Electronic Medical Record for patients with ALS (PEP ALS), responsible for assisting in the multidisciplinary monitoring of patients with ALS, safely and appropriately, based on the ALS Clinical Protocols and Therapeutic Guidelines (PCDT). To promote security in sharing patient data, a blockchain network was modeled to carry out transactions carried on the platform, thus ensuring a higher level of privacy and security. The integration of data regarding surveillance and monitoring can present significant benefits for the development of public policies and the planning of strategies at all levels of health care, in addition to providing a realistic view of the country's situation in relation to cases. Therefore, this digital health solution can be used as a tool for research, intervention, monitoring, and strengthening the response to ALS in the Brazilian Unified Health System.