INTEROPERABLE BLOCKCHAIN-BASED ARCHITECTURE FOR THE DEVELOPMENT OF A SPECIFIC ELECTRONIC REGISTRY FOR PATIENTS WITH AMYOTROPHIC LATERAL SCLEROSIS
Electronic Health Record, Health Information System, Interoperability, National Health Data Network, General Data Protection Law, Blockchain, Data Security, Data Sharing, Multidisciplinary Monitoring, Amyotrophic Lateral Sclerosis.
The Electronic Patient Record (PEP) is a tool that stores processable information about the health of patients, allowing the sharing of this information to the medical team in a safe and efficient way. Due to the evolution of technological resources, these tools started to have more features and, consequently, more importance in the health area. In addition to containing information that allows communication between the entire medical team, the PEP is capable of providing continuity of clinical care, gathering important information that, when analyzed, can contribute both to diagnosis, control of disease evolution, treatment adequate, as well as for the advancement of research on various diseases considered rare, such as Amyotrophic Lateral Sclerosis (ALS). ALS is a chronic and progressive disease that irreversibly affects motor neurons. It is a disease with a complex cause and a cure that is still unknown. With a view to improving the patient's quality of life, multidisciplinary monitoring with sharing of information from different health professionals is essential. Thus, this work aims to present a blockchain-based architecture for the development of a specific electronic medical record for patients with ALS. Given the need to exchange information, this architecture will be interoperable with other PEPs in Brazil in accordance with the standards of the National Health Data Network (RNDS) and adherent to the General Data Protection Law (LGPD). It is expected that this architecture provides greater integration between the professionals who are part of the multidisciplinary team, ensuring security, privacy and confidentiality in the management of information in the medical record for ALS.