Resource, opportunity not to be missed. It is telemedicine, and e-health in general, seen by patient associations. In the specific case, Apmarr, Anmar and Apiafco, among the protagonists of the webinar “Digital Health. Innovation in the treatment of chronic autoimmune rheumatological and dermatological diseases ”, promoted by Ucb Italia.
“Digitalized medicine is an opportunity that we cannot miss – says Valeria Corrazza, president of Apiafco (Association of Italian Psoriasis Friends of the Corazza Foundation) – a phenomenon in constant evolution. But to be successful you need a cultural change of the system that thinks of a continuous implementation with the development of new knowledge. But we must consider the level of confidence in the technology of all users, doctors, public administrations and patients. The implementation of digital technology in medicine cannot be separated from a conscious and participatory engagement of the patient “. “The associations are involved in the development of technologies in the assistance of patients and caregivers who will use them – continues the president -. We should use these technologies in care, treatment and access pathways in a timely and coordinated manner. I believe that the involvement of scientific societies is also needed. Operating systems have to talk more for data transfer than for patients. Electronic health records and telemedicine must be outlined in a simple and secure digital path with regard to sensitive data “.
And again: “During the emergency in about 200 Asl – still Corrazza – the operators have developed small platforms using systems, such as Skype, which were not born for healthcare. However, given the satisfaction of doctors and patients, dedicated platforms were purchased. However, the interoperability of the data of the information systems of healthcare companies must be respected in order to exchange data in complete safety. In the light of the experiences made, let’s start again from three, not from scratch, because teleconsultation, tele-assistance, tele-referencing, remote monitoring, a digital approach between the doctor and the patients have already been used. If faced by those who have to make decisions in a coordinated way, using digital medicine we could have a huge return for the patient’s health ”.
“Telemedicine can offer a lot, it avoids travel problems – explains Antonella Celano, president of Apmarr (National Association of People with Rheumatological and Rare Diseases) – helps to break down waiting lists, allows the patient to interact with the doctor even from a distance. Even those living in inaccessible areas, when 5G is fully operational, may have greater access to the health system. However, some patients do not perceive it as a great innovation ”. But in addition to telemedicine, according to patient associations, now is the time to focus on digital literacy. “If we do not have adequate preparation – admits Celano – we cannot use digital tools. There are people who have not activated the Spid and thus cannot see the electronic health record ”. And on the electronic health record: “It has great potential but it is not implemented” adds Celano.
“During the lockdown I felt abandoned – remembers Silvia Tonolo, president of Anmar (National Association of Rheumatic Diseases) – when there was nothing, if not the whatsapp or the simple email to reach my specialist doctor. Furthermore, the general practitioner knows very little about our pathologies. It is evident that the general practitioner does not have the possibility to interact with other specialists who deal with the disease like mine. We work in silos. We do telemedicine without interoperability for whom? I can be a rheumatological patient with dermatological impairment, so if the rheumatologist and the dermatologist do not speak to each other, I cannot interoperate their data with those of the general practitioner, consequently I cannot have the best treatment. A push is needed to ensure that digitization is used consistently across regions. We need interoperability, not just platforms “.