Réseau DrépanoMRS

The treatment and monitoring network for sickle cell anaemia patients in Madagascar is an initiative launched by LCDM Solimad, in partnership with the LARTIC Laboratory and its technical and financial partners. The aim of the network is to overcome the isolation of doctors treating sickle cell anaemia patients, and provide patients with better access to care. The main obstacles, which include internet access issues in areas a long way from major cities, have now been identified and solutions and recommendations in place: these recommendations are of interest not only to Madagascar but also other countries seeking to implement an electronic healthcare network without suitable internet infrastructure. This is the major challenge facing the initiative.

The initiative provides a long term solution to at least three major problems in treating and monitoring patients with sickle cell anaemia in Madagascar. 1. Sickle cell anaemia is a chronic disease, and homozygous patients requiring regular monthly basis check-ups (according to scientific recommendations approved by the Ministry of Public Health) often forget their appointments, a situation which is often ignored but only serves to worsen their health. The LARTIC Laboratory team is currently running survey at the Fianarantsoa sickle cell anaemia clinic where 6 out of 16 families asked said that they had forgotten their appointment and their episodes were becoming increasingly intolerable. In this same survey, 3 of 16 families had dropped out of treatment for the sole reason of regularly missing their appointments. It is an almost unthinkable reason that has a negative influence on the quality of the treatment offered by the medical team caring for the patients. The solution provided by the DrépanoMRS app is an electronic diary that automatically sends an SMS reminder for the next appointment. The Doctor simply selects the date of the next appointment and the system automatically sends the patient an SMS on the eve of their appointment. The 16 families are currently in the system and awaiting the SMS alert on the eve of their next appointment. 2. Another major problem was uncovered in South-East Madagascar, an area of high prevalence, with up to 30% of the population affected: this is the time it takes for the central body to respond to blood bag shortage alert. Sickle cell anaemia sufferers are very fragile patients. They haemoglobin levels may fall to 3g/L from one day to the next without any notice, and the patient will die without an emergency blood transfusion. It has been one of the causes of mortality in this region for the past ten years. The problem is caused by the delay in informing Antananarivo that blood bags are running out, and the delay in processing orders and shipping products to the destination. The DrépanoMRS app solves this problem with its secure file sharing module that speeds up the process and saves lives. 3. The final problem that the initiative solves is the enormous challenged that comes with implementing an electronic network in a low bandwidth country. Slow internet is the main reason that doctors give up on the system. The app requires an internet connection when it is online. In 2016, the DrépanoMRS central coordinating team discovered that attending physicians had not logged on for more than a year die to internet connectivity issues. With very low bandwidth, it was taking too long to load a page and it sometimes failed to save data. The solution, which is currently being trialled in Fianarantsoa and Antananarivo, produces a local copy (which does not need an internet connection to launch the app) which is identical to the online version/ Doctors only need to connect to the internet when data is being synchronised, which only takes a few minutes once a month. Data that is synchronised with the online server is automatically programmed to be executed (appointment reminder SMS, tracking, and central notifications). In the informed consent form that the patient signed with the doctor before allowing their file to be processed online, patients are asked to inform the doctor if they are travelling. This is done following the synchronisation of data so that the file for the patient in question can be sent to the server. From then, they can be treated in the network. These three key points are solutions that improve the system, because since it was implemented in 2012, Tolagnaro has more than 200 electronic files in limbo, as does Farafangana, and Toamasina has 300, none of which have been uploaded because of internet connectivity issues. The same is true of Antananarivo. Now that the study is coming to an end, the successful tests carried out between Fianarantsoa and Antananarivo with their patients who are currently monitored remotely without any problems, staff at the LARTIC Laboratory and the NGO LCDM Solimad, will be issuing local apps to all sites in Madagascar, to bring the network back to life. Following publication of the study’s results, we plan to offer our solution to our friends, partners, and those seeking to set up an electronic treatment network for sickle cell anaemia and are faced with internet access issues.

The proposed solution, adapted to Madagascar’s context and resources, is a business model based on clinical information systems that make a scientific contribution to developing an electronic healthcare network by combining digital tech and mobile telecommunications to deliver a national healthcare service that is comprehensive, effective, and highly secure, as well as to generate national statistics to for results that closely match reality, given that the app includes a module for analysing the data it contains.