Banca de DEFESA: INGRIDY MARINA PIERRE BARBALHO

Uma banca de DEFESA de DOUTORADO foi cadastrada pelo programa.
STUDENT : INGRIDY MARINA PIERRE BARBALHO
DATE: 30/08/2023
TIME: 09:00
LOCAL: Laboratório de Inovação Tecnológica em Saúde (LAIS)/UFRN
TITLE:

RevELA Platform: A digital health solution for the management of care and surveillance of patients with Amyotrophic Lateral Sclerosis in Brazil

KEY WORDS:

Electronic health record, Digital health solution, Amyotrophic Lateral Sclerosis, Public Health, Public Policy, Blockchain. 

PAGES: 58
BIG AREA: Engenharias
AREA: Engenharia Biomédica
SUMMARY:

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, such as data related to the diagnosis and progression of the disease. In Brazil, the lack of information about ALS limits the use of data for advancing research and developing public policies that favor people affected by this health condition. In this sense, this work aims to present the development of a digital health solution for managing the care and monitoring of the ALS disease in Brazil to provide health surveillance with valuable and timely information to support the formulation of public policies and, at the same time, time to qualify and improve the follow-up of patients with ALS through an electronic health record. The proposed solution is composed of two tools: the Brazilian National Registry of ALS, responsible for collecting epidemiological data from patients with ALS throughout Brazil in a structured way; and the Electronic Health Record for ALS patients (PEP ELA, acronym in Portuguese), responsible for assisting in the multidisciplinary follow-up of patients with ALS, safely and adequately, based on the ALS Clinical Protocols and Therapeutic Guidelines (PCDT, acronym in Portuguese). This work was guided by the action-research methodology, and all phases of development of the platform were carried out sequentially in several cycles through the application of the iterative and incremental model using the SCRUM framework. It is essential to highlight that the development of this solution had the support of the Brazilian Ministry of Health and was conceived 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 the care of patients with ALS. To promote security in the sharing of patient data, a blockchain network was modeled to receive smart contracts related to transactions carried out on the platform, thus ensuring the highest level of privacy and security. The developed platform has great potential for strengthening public policies since the data stored on the platform can be analyzed by teams of care specialists and public health managers, both in the individual and collective monitoring of people living with ALS in Brazil. The integration of surveillance and monitoring data can have 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 situation in the country about cases. Therefore, this digital health solution can be used for research, intervention, monitoring, and strengthening the response to ALS in the Brazilian Health System.

COMMITTEE MEMBERS:
Presidente - 2488270 - RICARDO ALEXSANDRO DE MEDEIROS VALENTIM
Interno - 2524053 - ANTONIO LUIZ PEREIRA DE SIQUEIRA CAMPOS
Externo ao Programa - 1510735 - DANILO ALVES PINTO NAGEM - UFRNExterna ao Programa - 2562782 - KARILANY DANTAS COUTINHO - UFRNExterno à Instituição - JAILTON CARLOS DE PAIVA - IFRN
Externo à Instituição - CRISTINE MARTINS GOMES DE GUSMÃO - UFPE
Externo à Instituição - ANTONIO HIGOR FREIRE DE MORAIS - IFRN