Dados do Trabalho

Título

Proposal of an interoperable Electronic Health Record for the multidisciplinary follow-up of patients with Amyotrophic Lateral Sclerosis

Resumo

Amyotrophic Lateral Sclerosis (ALS) is characterized as a rare neurodegenerative disease with an unknown cure. Due to its irreversible progression and complexity, it is essential that patients diagnosed with ALS are followed up by a multidisciplinary team. By involving different professionals in the health care of a patient with ALS, it is essential to consider the use of a platform capable of collecting and sharing information by each specialty, building a concise and cohesive clinical history to assist the multidisciplinary team in decision-making. It is in this perspective that electronic health records arise. This tool stores processable information about patients’ health, allowing the sharing of this information to the multidisciplinary team safely and efficiently. Due to the evolution of technological resources, these tools have more functionalities and, consequently, more significant importance in the health area. In addition to containing information that allows communication between the entire medical team, the electronic health record can provide continuity of clinical care, gathering important information that, when analyzed, can contribute to the diagnosis and control of the evolution of diseases and adequate treatment. Given this context, the present work proposes developing a platform for collecting and storing structured data related to patients with ALS. The main objective is to present a blockchain-based architecture for developing a specific electronic health record for ALS patients. Given the need for information exchange, this architecture will be interoperable, following the Health Level 7 (HL7) standards with the Fast Healthcare Interoperability Resources (FHIR) specification, in accordance with the standards of the National Health Data Network (RNDS, its Portuguese acronym) and adherent to the General Data Protection Law (LGPD, ​​its Portuguese acronym). It is expected that this architecture will provide greater integration between the professionals who make up the multidisciplinary team, guaranteeing security, privacy, and confidentiality in managing information in the electronic health record for ALS. Once developed, this electronic health record will store essential data that can be used to plan health interventions, support decision-making processes, and follow up in more detail on the evolution of ALS in the patients.