A digital platform is active, the first in Italy, designed to remotely monitor clinical data, adherence to treatment, side effects and the quality of life of those suffering from blood cancer. It is called Alliance and was created by the Gimema Foundation (Italian Group of Adult Hematological Diseases www.gimema.it) for patients and doctors during the pandemic, and beyond. Alliance today involves over 20 structures including local and university hospitals, and already has about 400 registered patients, but the idea is to spread it throughout the national territory.
One platform, two sites
The system, developed in collaboration with the academic company ESD (Evaluation Software Development) and described on JMIR Research Protocols, has two access portals: one dedicated to the doctors of the blood centers involved and one to patients. Membership of the platform takes place on the proposal of the treating hematologist. Once registered, the patient receives from the doctor the credentials with which he can access his personal area whenever he wants and from any device.
The portal dedicated to the patient contains a questionnaire with some questions on specific symptoms, adherence to treatment, frequency and intensity of symptoms and toxicities related to therapy, and questions on quality of life. If the patient’s responses indicate a potentially important problem, the platform detects it and automatically sends an alert e-mail to the hematologist. The doctor can quickly decide what to do: contact the patient for a video consultation or for an in-person check-up. In addition to communicating with his haematologist, and being able to do it 24 hours a day, the patient can independently monitor their symptoms over time, thanks to an easy-to-use interface, which summarizes and shows the evolution of the state of health through graphs.
Digital health to improve survival
“We have scientific evidence that shows how systematic monitoring of symptoms through digital platforms can increase the survival of patients in an advanced stage of the disease”, explained Marco Vignetti, president of the Gimema Foundation, during the Alliance presentation conference, which was held last December in Rome: “The systematic use of these tools in clinical practice can optimize the interview, because the doctor is able to set up a much more targeted communication on specific aspects relevant to the patient. In recent years – he added – digital health technologies have evolved and are increasingly necessary in hospitals “.
Patient protagonists and responsible
The digitalization of the doctor-patient relationship ensures continuity of care and improves the management of symptoms, but not only: “Increasing participation makes the patient more active and protagonist of their own care path”, underlined Fabio Efficace, Head of the Quality of Life Unit. of the Gimema Foundation: “Furthermore, the possibility of coming into contact with the treating doctor at any time never makes him feel abandoned”.
Being able to better understand the real weight of the symptoms can help the haematologist to act in a more timely and personalized way and to facilitate adherence to therapy: “We know that many times patients may not take drugs in the way they are prescribed simply because they cause side effects that the patient does not tolerate ”, concludes Efficace:“ Being able to monitor this aspect involves a significant improvement not only in adherence to therapies but also in the quality of life. The platform is dynamic and in the future it may be enriched with new functions thanks to artificial intelligence “.
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