It can be difficult to monitor treatment progress and provide emergency care in a large country like Brazil, where many PWBD live far from an HTC and have no easy access to healthcare. To help address this issue, the Federação Brasileira de Hemofilia (FBH) created the software and mobile application Tuguy—blood in motion in the indigenous language of Brazil Guarani-Kaiowá—to track patient adherence to treatment, encourage patient autonomy and generate data on treatment and bleed prevention. The WFH Development Grant Program supported the FBH for this project so they could develop digital content for the application and conduct trainings for PWBD and healthcare professionals (HCPs).
The application provides HCPs with the appropriate data to inform treatment decisions and monitor adherence, facilitating appropriate follow-ups and decreasing the frequency of HTC visits. Tuguy also has a tool for PWBD to send emergency messages and receive remote care. This functionality became invaluable during the COVID-19 pandemic because it made home treatment in remote areas possible.
The data collected through Tuguy will also support FBH’s advocacy efforts with the government, especially regarding the improvement of care delivery and the increase in equitable access to treatment in the country. An additional benefit of the mobile application is that it also features testimonial videos of PWBD to empower and strengthen connection in the local bleeding disorders community.
A series of 13 instructional videos were developed for Tuguy to teach PWBD, family members and HCPs on hemostatic agent infusion and what do in emergency situations. In addition to this, over 1,250 PWBD and several HCPs were trained on Tuguy to record patient data and generate patient reports.
Due to the implementation of a new data protection law in 2021, the FBH was required to adapt the mobile application and software to protect sensitive medical and personal data. Complying with this new law was a particularly important step in the successful implementation of the project. The FBH continued the project with the collaboration of a governmental body to prevent cases of user data violation, and to ensure full compliance with the law. Moving forward, the FBH plans to scale up the implementation of the mobile application in each Brazilian state.
To learn more about the WFH Development Grant Program, please click here.
The WFH Development Grant Program is supported by exclusive funding from Sanofi.