Implantação de centro especializado em reabilitação: vantagens e desvantagens apontadas pelos gestores municipais de saúde

Pereira, Juarez; Machado, Wiliam César Alves

doi:10.11606/issn.2238-6149.v26i3p373-381

Cited by 4 publications

(5 citation statements)

References 15 publications

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“…The CERs are structural components of the National Policy on Comprehensive Care of People with Rare Diseases. According to the integrality of care, these centers perform treatment, concession, adaptation, and maintenance of assistive technology, constituting a reference for the health care network in the territory [ 42 ]. SRDRs and CERs work together with university hospitals to promote comprehensive and universal care for rare disease patients.…”

Section: Methodsmentioning

confidence: 99%

“…The traditional concept defines a university hospital as an institution that is characterized by four traits: being an extension of a health teaching establishment (of a medical school, for example), providing university training in the health field, being officially recognized as a teaching hospital and subject to the supervision of competent authorities, and providing more complex medical care (tertiary level) to a portion of the population and being able to receive patients from SRTNs [ 42 , 43 ].…”

Section: Methodsmentioning

confidence: 99%

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Mapping, Infrastructure, and Data Analysis for the Brazilian Network of Rare Diseases: Protocol for the RARASnet Observational Cohort Study

Domingos

2021

JMIR Res Protoc

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Background A rare disease is a medical condition with low prevalence in the general population, but these can collectively affect up to 10% of the population. Thus, rare diseases have a significant impact on the health care system, and health professionals must be familiar with their diagnosis, management, and treatment. Objective This paper aims to provide health indicators regarding the rare diseases in Brazil and to create a network of reference centers with health professionals from different regions of the country. RARASnet proposes to map, analyze, and communicate all the data regarding the infrastructure of the centers and the patients’ progress or needs. The focus of the proposed study is to provide all the technical infrastructure and analysis, following the World Health Organization and the Brazilian Ministry of Health guidelines. Methods To build this digitized system, we will provide a security framework to assure the privacy and protection of each patient when collecting data. Systems development life cycle methodologies will also be applied to align software development, infrastructure operation, and quality assurance. After data collection of all information designed by the specialists, the computational analysis, modeling, and results will be communicated in scientific research papers and a digital health observatory. Results The project has several activities, and it is in an initial stage. Initially, a survey was given to all health care centers to understand the technical aspects of each network member, such as the existence of computers, technical support staff, and digitized systems. In this survey, we detected that 59% (23/39) of participating health units have electronic medical records, while 41% (16/39) have paper records. Therefore, we will have different strategies to access the data from each center in the data collection phase. Later, we will standardize and analyze the clinical and epidemiological data and use these data to develop a national network for monitoring rare diseases and a digital health observatory to make the information available. The project had its financing approved in December 2019. Retrospective data collection started in October 2020, and we expect to finish in January 2021. During the third quarter of 2020, we enrolled 40 health institutions from all regions of Brazil. Conclusions The nature of rare disease diagnosis is complex and diverse, and many problems will be faced in the evolution of the project. However, decisions based on data analysis are the best option for the improvement of the rare disease network in Brazil. The creation of RARASnet, along with all the digitized infrastructure, can improve the accessibility of information and standardization of rare diseases in the country. International Registered Report Identifier (IRRID) DERR1-10.2196/24826

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Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Mapping, Infrastructure, and Data Analysis for the Brazilian Network of Rare Diseases: Protocol for the RARASnet Observational Cohort Study

Domingos

2021

JMIR Res Protoc

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Section: Brazilian Rare Disease Networkmentioning

confidence: 99%

Mapping, Infrastructure, and Data Analysis for the Brazilian Network of Rare Diseases: Protocol for the RARASnet Observational Cohort Study (Preprint)

Alves¹,

Yamada²,

Bernardi³

et al. 2020

Preprint

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BACKGROUND A rare disease is a medical condition with low prevalence in the general population, but that collectively can affect up to 10% of the population. Thus, rare diseases have a significant impact on the healthcare system, and health professionals must be familiar with the diagnosis, management, and treatment. OBJECTIVE To provide health indicators regarding the rare diseases in Brazil, and to create a network of reference centers with health professionals from different regions of the country, the RARASnet proposes to map, analyze and communicate all the data regarding the infrastructure of the centers, and the patient's evolution or needs. The focus of the proposed study is to provide all the technical infrastructure and analysis following the World Health Organization and the Brazilian Ministry of Health guidelines. METHODS To build this digitized system, we will provide a security framework to assure the privacy and protection of each patient when collecting data. Also, DevOps methodologies will be applied to align software development, infrastructure operation, and quality assurance. After data collection of all information designed by specialists, the computational analysis, modeling, and results will be communicated in scientific research papers and in a digital health observatory. RESULTS The project has several activities and it is in an initial stage. Initially, a survey was applied to all health care centers to understand the technical aspects of each network member such as the existence of computers,technical support staff, and digitized systems. In this survey, we detected that 64% of participating health units have electronic medical records, while 36% have paper records. Therefore, we will have different strategies to access the data from each center. CONCLUSIONS The nature of rare disease diagnosis is complex and diverse, and many problems will be faced in the evolution of the project. However, decisions based on data analysis are the best option for the improvement of the rare disease network in Brazil. The creation of the RARASnet, along with all the digitized infrastructure, can improve the accessibility of information and standardization of the rare diseases in the country.

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“…Criados pela Portaria nº 793/2012, que instituiu a Rede de Cuidados à Pessoa com Deficiência (RCPD), os CER são serviços de saúde que ofertam atenção especializada em reabilitação para pessoas com deficiência em todo o território nacional 5 . Esses centros são referências para a RCPD e para as políticas públicas brasileiras de atenção à pessoa com deficiência 6 .…”

Section: Introductionunclassified

Construção e validação de modelo lógico para Centros Especializados em Reabilitação

et al. 2021

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OBJETIVO Construir e validar um modelo lógico para a atenção nos Centros Especializados em Reabilitação (CER) a partir da análise do processo de trabalho e de questões organizativas de centros do Rio Grande do Norte. MÉTODOS Estudo metodológico desenvolvido em três etapas: 1) estudo documental de legislações e portarias relacionadas ao serviço de saúde e à Rede de Cuidados à Pessoa com Deficiência (RCPD); 2) realização de grupos focais, com estudo censitário dos CER do Rio Grande do Norte, para compreender e avaliar o cotidiano do serviço; e 3) sistematização das informações coletadas e, por fim, proposição e validação do modelo lógico avaliativo. RESULTADOS O modelo englobou cinco categorias centrais do processo de trabalho e organizacional: “demandas”, “recursos” (insumos, financeiros e força de trabalho), “processos”, “produtos e resultados” e “missão, valores e fatores externos”. CONCLUSÃO O modelo lógico construído foi adequado para representação gráfica do processo de trabalho e questões organizativas dos CER. Evidenciou-se que o funcionamento dos serviços está alinhado com as normativas. Contudo, ainda há lacunas organizacionais que precisam ser abordadas a fim de melhorar a resolutividade do serviço e a articulação com outros pontos da rede.

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Implantação de centro especializado em reabilitação: vantagens e desvantagens apontadas pelos gestores municipais de saúde

Cited by 4 publications

References 15 publications

Mapping, Infrastructure, and Data Analysis for the Brazilian Network of Rare Diseases: Protocol for the RARASnet Observational Cohort Study

Mapping, Infrastructure, and Data Analysis for the Brazilian Network of Rare Diseases: Protocol for the RARASnet Observational Cohort Study

Mapping, Infrastructure, and Data Analysis for the Brazilian Network of Rare Diseases: Protocol for the RARASnet Observational Cohort Study (Preprint)

Construção e validação de modelo lógico para Centros Especializados em Reabilitação

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