“One thing I’d like has to do with the goal of patient organizations to be increasingly recognized and valued – in terms of the value of what we do – by industry stakeholders. those who work in pharmaceutical companies, at the tables of regional health companies, at the ministry we offer a few days of volunteering in which you can learn a lot directly on your own skin”. It is the proposal that Rosanna d’Antona, president of Europa Donna Italia, would combine next year with a new report on health associations. If the report presented today in Milan – conducted on 5 associations of the Allies for Health network – tried to quantify the economic and social value of the voluntary work guaranteed by these realities, “next year we would like to do two things: expand the number of associations in the report, but also going to report on our ‘advocacy’ work, i.e. measuring our legislative impact: how many laws have been passed” on proposed issues, “how many motions have been accepted, how many hearings taken into consideration. if we multiply what each of us does at a national level, but also at a regional level, I believe that important numbers could come out”.
“Today – continues d’Antona – we are on a journey towards where we should be. I proposed doing this exercise of measuring what our volunteers do because we wanted to give a tangible measurement to something which is actually intangible, i.e. the availability, heart, being at the side of patients without pay, raising funds for specialist visits, equipment for hospitals and so on. We always say that we would like to do more and be listened to better and better. And so this is a starting point: pooling our numbers, an operation that was also useful for getting to know each other better, for affirming that we care about patients, but we also generate value and have the ambition to be around the institutional and decision-making tables. we do turns into millions of non-spending, it becomes an activity that allows us to complement what the national health system is perhaps unable to do in some regions and for some services”. The institutional front is open to this confrontation with the associations, says Manuela Tamburo De Bella, manager of Agenas Uos Hospital Clinical Networks and Monitoring Ministerial Decree 70: “I hope that for all sectors of care it will be possible to ensure that the representation of the associations is institutionalized and equal throughout the national territory”, he hopes.
“We believe in the power of networking”, assures Annalisa Scopinaro, president of Uniamo, the Italian Federation of Rare Diseases. “The work of the volunteers is not quantifiable only in terms of hours, but in terms of listening and empathy with the patient and in bringing out his assistance needs – adds Maria Rosaria di Somma, managing director of Aisc (Italian Association of heart failure and cardiovascular prevention) – It is also of enormous value for the measures that the institutions must take: by listening to patients, we associations receive the stimuli that show us the way”. “It is important to be able to highlight not only the weaknesses of the system – concluded in a message Italia Agresta, vice president of Apmarr (National Association of People with Rheumatological and Rare Diseases) – but also to identify new opportunities”.
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