BBChain: viability of the DLT technology (Distributed Ledger Technology) in the São Paulo State health ecosystem

Abstract

Rare diseases are those whose incidence occurs in up to 65 cases in each group of 100 thousand people [Ministry of Health: available at http://portalms.saude.gov.br/saude-de-az/doencas-raras]. It is estimated that there are between 6,000 and 8,000 different types of rare diseases worldwide [Ministry of Health: available at http://portalms.saude.gov.br/saude-de-a-z/doencas-raras]. In Brazil, there are approximately 13 million patients, 75% of them are children [Ministry of Health: available at http://portalms.saude.gov.br/saude-de-a-z/doencas-raras]. Still, according to the Ministry of Health, 30% of these children die at the age of five due to lack of adequate diagnosis and treatment, for the medical community lacks assertive knowledge on the subject. Correct diagnoses, in the shortest possible time, and adherence to the prescribed treatment are the major factors of remission and increase of quality of life of patients with rare and chronic diseases, and those who are in home care. However, 8 out of 10 patients have difficulties in maintaining adequate treatment due to the inability of caregivers to adhere to the recommended medical protocols. Add to this scenario the lack of information and training of health professionals about these types of cases and we have a dramatic situation. The processes submitted for diagnosis and treatment involve a number of specialist physicians (on average 12) who share fragmented information, a situation that leaves for the patient's family the connection between them. This, in turn, causes errors in interpretation, increase in diagnosis time and high financial and emotional costs. In other words, the information is dispersed among all the actors in the treatment cycles. Up to now, there is not an open platform that safely allows the storage, integration, and sharing of information among those involved within the health cycle. In the medium term, therefore, we want to develop a safe platform for managing the cycle of treatment of rare diseases and with that, to halve the time of diagnosis of these diseases. For this reason, our objectives for this phase 1 PIPE project are to assess the technical feasibility of a distributed ledger technology (DLT) platform that delivers: 1) integrity and security, meaning: guarantee of not transmitting incorrect data;2) authenticity, meaning: through digital signature and digital certificates;3) confidentiality, meaning: using peer-to-peer communication, whereby only those who must access the information effectively receive it;4) traceability and auditing, meaning: capture information changes and identify those responsible for the changes. Evidently, we will follow the General Data Protection Act [Planalto: disponível em http://www.planalto.gov.br/ccivil_03/_ato2015-2018/2018/lei/L13709.htm]. Thus, our platform will facilitate integration through APIs with legacy and innovative systems. As results, we expect the tests to demonstrate the feasibility or non-feasibility of DLT (CORDA) technology in the context of health in the state of São Paulo. In this way, we will analyze all the points and characteristics (integrity, authenticity, confidentiality, traceability, and auditing) individually, and we hope to define the levels of interdependence between them. Even more importantly, we expect metrics for robustness, consistency, and technology weakness in this context. (AU)