RemoTe, a telemedicine project for patients with haemophilia, is underway

The acronym REmoTe contains several meanings: R stands for rarity, EMO for haemophilia, TE for telemedicine; with “remote” we can also mean “remotely”, an expression that, especially during the pandemic, has taken on the meaning “from home”. And this is precisely the meaning of REmoTe, the telemedicine project in the field of congenital haemorrhagic diseases (mec) and in particular haemophilia, developed by CSL Behring and Altems – High school of economics and management of health systems, in collaboration with some centers of excellence for the treatment of this pathology and patient associations. The initiative was presented today during the online event ‘The importance of telemedicine in haemophilia, the REmoTe project’ – sponsored by FedEmo-Federation of Haemophilic Associations and organized by the Rare Diseases Observatory thanks to the company’s unconditional contribution. – just over a year after the publication of the document “The value of care and assistance in haemophilia”, a notebook written by clinicians, hospital pharmacists, economists and representatives of patient associations on the various aspects of taking charge of these rare patients and with an approach oriented towards Value based health care (Vbhc). For patients, the importance of telemedicine, and therefore of services such as television, had emerged even before the Covid-19 pandemic, but the health crisis has highlighted and accentuated this need. “The particular historical period we are experiencing – says Americo Cicchetti, director of Altems – has certainly demonstrated the validity of telemedicine which turns out to be a safe tool for care and assistance even for fragile and chronic patients such as rare patients. In fact, REmoTe was designed for people with haemophilia. Telemedicine, among the many aspects to consider, has in fact a positive impact on an organizational level: digital tools improve services, allowing the patient to stay at home. These tools, being within everyone’s reach, can therefore complement existing procedures, ensure correct acceptance and make it possible to reimburse the services provided, to give examples “. For people with haemophilia, the use of telemedicine is an action that has been considered for some time. But thanks to this new project, an increasingly solid structure is being met. Among the Haemophilia Centers currently involved by REmoTe, two have so far completed the project: the Uoc of Internal Medicine, Hemorrhagic and Thrombotic Diseases – Federico II University Hospital (Naples) and the SODc Hemorrhagic and Coagulation Diseases – Hospital Careggi university (Florence), both in collaboration with the territorial associations Arce (Campania regional association of haemophilia) and Ate Odv (Tuscan haemophilia association). This is because the use of telemedicine must be personalized and synergistic with the organizational, clinical and territorial specificities of each individual center. The project includes the creation of procedures for the provision of televisions – but also of services such as remote sitting, remote assistance and remote collaboration – complete and safe, customized for each center, as well as the creation of training and information material for patients. . And it will be precisely the patients’ experience that will give the input to an improvement of the system: in addition to evaluating the health service received, they can express their degree of satisfaction on the technological side based on the communication application and the device used ( pc, smartphone or tablet). Meanwhile, the first data collected by Aou Federico II and processed by Altems – it emerged from the online meeting – are positive. Last July, an experimental period in which 6 televised sessions were performed, 85% of haemophilia patients expressed a very high satisfaction with the performance. 100% of them rated the audio / video quality as good (maximum value) and the device used by all was the PC. Similar speech for the Aou Careggi: according to the first data dating back to the period September-November, during which 3 televisions were carried out, the patients declared the maximum satisfaction of the service, almost no difficulty in interacting and all used the PC defining good audio / video quality. But the most interesting fact that emerges from the experience of Florence is the residence of patients, all coming from municipalities outside the Tuscany region: this further supports the fact that television facilitates healthcare personnel in the management of assistance to patients who avoid those movements no longer necessary along the Peninsula. Altems in 2020 also analyzed 1,633 telemedicine services performed throughout Italy in which more than 500 people were involved. In particular, patients from the Oncology (98), Neurology (223) and Child Neuropsychiatry (87) wards made use of television. The level of satisfaction was generally very high and the audio / video quality was rated as good by 53% of patients. The “National guidelines for the provision of services in Telemedicine”, defined by the Ministry of Health and approved by the State-Regions conference on December 17, 2020, stressed that telemedicine solutions must be considered as the preferential approach for the provision check-ups and services that do not necessarily require direct contact with the patient. “Television has thus fully entered the National Health Service – says Oliver Schmitt, CEO of CSL Behring Italia – and presents itself as an innovative way of accessing services that affect multiple areas. It responds to various needs and can be of great support for the care and assistance of patients with congenital bleeding diseases, facilitating their interaction with the clinician and pharmacist. CSL Behring has intercepted these needs and carried out the REmoTe project characterized by a Value Based Health Care approach that goes beyond drugs “.