“The report presented today highlights the importance of constant updating of the New Guarantee System” of the LEAs, “trying to ensure full significance of the data that is collected on the basis of which the mechanism, including rewards, then operates in the distribution of resources of the Ministry to the Regions”. Paolo Bandiera, director of General Affairs and Institutional Relations of the Italian Multiple Sclerosis Association (Aism), told Adnkronos Salute this morning while participating in the presentation of the report 'Evaluating well to guarantee equity. Recommendations for equity in the New Guarantee System (NSG) of essential levels of assistance, presented in Rome and created by Salutequità in collaboration with patient associations, scientific societies, managers of healthcare facilities, healthcare professionals and the unconditional contribution of the Servier Group in Italy.
“From the point of view of the patient association – continues Bandiera – such as Aism, which also contributed to the development of this report and the elaboration of the recommendations, we think it is very important to focus on some aspects. The first concerns accounting , that is, the fact that, beyond a summary number which is then published in the newspapers, there is knowledge, understanding of the mechanism behind” the formation of the data, “the guarantee system, in fact. Above all – he adds – it is important that these data are presented together with other indicators that make it clear how the Regions are actually implementing, as well as for the themes of the Pnrr, the great transformations that are taking place in the health system. The risk of limiting ourselves to a synthetic indicator” is that make “a sort of report card that perhaps makes the Regions more or less capable, in the eyes of the community”, instead “we need to go deeper”.
Another fundamental aspect highlighted by Bandiera concerns the fact that “we must all learn to be more involved in what is not a process that concerns only the ministry and the Regions, but which involves the entire system, the community and the association of patients. From the point of view, for example, of data design, of the evaluation model and also of helping to cover gaps that exist today – such as for example in the field of rehabilitation, in the PDTA (Diagnostic Therapeutic Care Path, ed.) – in the management processes for some pathologies, such as multiple sclerosis, we need to build data flows. We can also do this together”. In this regard, “Aism makes available, also as an experience – emphasizes Bandiera – an observational research project and the Multiple Sclerosis Registry which, on the basis of patient consent, has collected and is collecting data on a continuous basis, which certainly, can also begin to be part of this participatory data governance, to actually have significant data with an impact on how the health condition is changing and on how we are able to implement the right to health for a complex pathology such as chronic multiple sclerosis and evolutionary. This – he concludes – evidently applies to citizens and patients, more generally”.
#Lea #Aism #39contextualize #data #resources #distributed #Regions39
