The keywords to restart, the patients’ voice ‘resilience and system’

“The pandemic has razed us to the ground. Now it is time to restart with resilience, which means going back up. Anmar, which brings together 21 regional offices, wants to go back and break down the obstacles we have suffered as chronic patients in the last year and a half due to COVID-19”. Thus Silvia Tonolo, president of Anmar, National Association of Rheumatic Diseases Onlus (20 thousand members), speaking at the workshop for the presentation of the new board of patient associations of Allies for Health, a portal dedicated to medical-scientific information created by Novartis, of which Anmar joins, alongside Breathe Together, Uniamo Fimr Onlus and Walce Onlus. “I thank my predecessors – adds Tonolo – for the work done in Allies for Health, which means creating a system for health and for the good of all citizens. The project was born from the sharing of patient associations with scientific and companies that want to send a series of messages to institutions because together we can do it, we can go back after a pandemic that has destroyed us. We must understand that we have a wonderful future and that we must fight for health for all. Resilience means also say hope and alliance “. For Stefania Vallone, Secretariat-International Relations of Walce Onlus – Women Against Lung Cancer in Europe, in order to restart it is necessary” to create a system. we all feel to improve the serious inefficiencies that unfortunately our National Health Service, due to its complexity, generates to the detriment of people living with a pathology. orrective for these dysfunctions are precisely to create a system, to look in the same direction, not to exalt differences and specificities, but to share skills, resources and knowledge to work on themes common to all of us to reach a shared goal. The common denominator is in the concept of health: a single asset to be protected, an investment on which to create alliances with solid and valuable interactions. Allies for Health has worked in this direction and I am proud to be part of this new board to give my contribution and make our collective action stronger and more incisive. “Leaving a pandemic behind will not be easy, the real challenge of the new board of Allies for Health is to be able to give “a new innovative impetus to our NHS – says Simona Barbagaglia, president of the association Breathe together – by promoting digital technologies allied for prevention, citizen care and follow-up” For Barbaglia, therefore, the key word to restart is digitalization: “Surely the pandemic has shown how unprepared our country was from a digital point of view – he highlights – but at the same time it has brought out the great strength and resilience of the associations of patients, always present and alongside the sick, also through technology. With an incredible effort of creativity and cooperation, the associations were able to guarantee essential services and treatment rights such as the digitization of therapeutic plans for drugs, while health structures were closing down and relations with doctors and specialists were no longer present “. And on telemedicine: “It is a tool that has helped a lot, but it is not enough. An electronic health record, for example, would improve the exchange and access of information for the provision of health services for patient empowerment. “Finally Annalisa Scopinaro, president of Uniamo, the Federation of associations of people with rare diseases in Italy, for which the key word for post-Covid is “commitment”: “We have received a great legacy from those who preceded us – he remarks – We will give our contribution, thanks to the technology and means of Novartis. We will therefore have to implement and enrich what we did previously and deliver it to the next board, connected to the past and projected towards the future “.

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