Medical Apps for Tele-Monitoring Patients with Chronic Illness of Hemophilia
In the last 5 years the platform smart medicationTM rose to the mainly used telemonitoring platform for patients with hemophilia in Germany and Switzerland. About 20 % of all hemophilia patients and 30% of the hemophilia health care centers in Germany and Switzerland have already access to the platform. More than 100.000 single treatments have been documented over time. Meanwhile or the first time there is a sufficient pool of statistically significant data for research and treatment optimization for this small but extremely expensive group of chronically ill patients (~3.500 patients consume over 1 Billion € of medication in Germany).
The aim of this platform is to substantially improve therapy of patients with severe haemophilia by applying telemonitoring and using telemedicine tools. Especially the possibility of real-time monitoring of patients and the real-time analysis of the treatment data shall help to identify arising complications and so called target joints at an early stage (joints with unusual high bleeding events). Only with an early identification of health problems the doctor can countervail by adapting the therapy.
Individual targets are
• optimization and maintaining of the patient compliance in self-home treatment,
• monitoring of the medication stock of the patients to avoid out-of-stock-situations,
• surveillance of the therapy using and at the same time meeting the requirements of the transfusion act,
• rating of bleeding events by using photographs,
• avoiding and compensation of age-related limitations,
• prevention of bleeding related disabilities by therapy-optimization,
• support for the patient and its relatives and their psycho-social situation, by improving health care situation
• location-independent monitoring and interaction by the doctor without any delay
For security reasons no application is accessible in the app stores. Because of the enormously high treatment costs (around 280.000 € for medicaments per patient per year) the information that a person is looking for an app for hemophilia is already really interesting for marketing purposes. Therefor the app can be only downloaded from our servers after a registration of the responsible physician (no personal data of the patient like name or address is saved in the system and only the physician can relate a given user-id to an existing patient). We provide an Android and a platform independent HTML5-version of the application, which allows it to be used on all devices like smartphones, tablets, laptops and PCs as well as on all operating systems like Android, iOS and Windows.
smart medicationTM is a certified and registered medical device.
Hemophilia (background and addressed problems):
Haemophilia is a rare x-chromosomal inherited bleeding disorder. Haemophilia A and B are characterized by reduced or absence of the coagulation factor VIII or IX, respectively . Haemophilia A has a prevalence of 1 in 10,000 and haemophilia B of 1 in 50,000 males worldwide. The missing coagulation factor may lead to repeated bleeding episodes in all major joints and muscles with the consequence of severe arthrosis and finally disability. Massive bleeding and cerebral bleeding are usually life threatening. The missing coagulation factor needs to be administered intravenously on a regular basis (prophylactic treatment) or in case of suspected or overt bleeding (on-demand).
Unfortunately, in the late 1970s and early 1980s most concentrates manufactured from pooled plasma obtained from thousands of donors were contaminated with blood-borne viruses such as hepatitis B, hepatitis C (HCV) and the human immunodeficiency virus (HIV). Almost all patients were infected by HCV and a high percentage also by HIV. Until the mid-1990s approximately half of all patients infected by HIV died and an increasing number of liver failures due to HCV is still registered. This was a dramatic drawback in haemophilia care. New standards in purification procedures of plasma derived concentrates and the development of recombinant products improved the safety concentrates, so that the issue of infection was solved since the mid-1980s.
Because of the contamination of the factor concentrates in the past and thus according to German law (Transfusion Act) every treatment with plasma derived and also recombinant blood needs to be thoroughly documented. This includes cumulative data (batch number, quantity and type of the product) as well as the possibility to track the administered dose to the respective patient (German Federal Ministry of Justice). The usual way of recording treatment data by the patient is to fill in all data into a traditional paper diary. This way of documentation causes many problems. Mistakes in writing, unreadable handwriting, loss of diaries and with it the loss of all the treatment data, a long time gap between the documentation and the possibility of analyzing by the haemophilia treatment center are just some of the issues.
The patient gets his coagulation factor from the haemophilia treatment center or from the pharmacy, treats himself intravenously at home without any surveillance of his doctor, fills the treatment information into a paper diary and goes for consultation mostly twice per year. The paper records with hundreds of entries need to be manually entered before the treatment data can be analyzed, which is an unacceptable and almost infeasible work for a haemophilia treatment center. The 10 to 12 data points such as the personal data plus the treatment information from a patient who treats himself 3 times per week over 6 months (26 weeks), extrapolates to a minimum of 780 to 936 data points. Therefore a haemophilia treatment center with one hundred patients would have to manually enter over 150,000 data points per year. This is almost impossible to accomplish by the haemophilia center and an optimization of the therapy on the basis of the patients’ treatment data is very limited because of the already named problems. Furthermore, the requirements of the German/EU law (German Transfusion Act (Transfusionsgesetz - TFG)) can be hardly fulfilled, if the doctor has access to the treatment data only twice a year.
The use of telemedicine and telemonitoring provides a solution. The problems of monitoring the patient, his treatment and bleeding data, and with it the possibility of therapy optimization over every distance, as well as providing all requirements of the law can be solved by using mobile technologies. The possibility of immediate transmission, examination and supply of data provides a new quality of surveillance of haemophilia home treatment. Previous studies showed that most patients are willing to use electronic handhelds for documentation and also many advantages which result from the availability of the treatment data in an electronic form.
Former implementations of electronic diaries could not fulfill the requirements of the haemophilia treatment centers, patients and the Transfusion Act. They were used only for advertising, often developed by pharmaceutical companies and therefore product-bound or used antiquated technologies. Therefore in 2011 a new system named smart medication was developed as a scientific project in collaboration between the Philipps-University in Marburg, medical experts on haemophilia treatment in Frankfurt and Münster, the IT Company Rösch & Associates Information Engineering GmbH and the society for advancement of telemedicine in the haemostaseology (Verein zur Förderung der Telemedizin in der Hämostaseologie – VFTH e.V.). The aim of the project was to develop a system which is independent of any pharmaceutical company, free to use factor concentrates of all vendors and uses state of the art technology.
>>>> For further information visit www.vfth.org <<<<
- smart medication - 0 € (Free to use after free registration of the physician.)
- eHealth, electronic health, mHealth, mobile health, telemedicine, tele-monitoring, surveillance, hemophilia
- physician, patient, hospital, health care center
Available in the following app stores~Not available at any store
App Store links
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Frankfurt am Main, Germany