WHAT do the electronic dossier, the electronic prescription and the green pass have in common? They are all digital tools and all contain health data. But if some have had an easy and relatively fast road – just think of how much the pandemic has facilitated the implementation of the green pass – others have suffered from critical issues that are still far from being overcome. Like the electronic health record, a tool that is still struggling to become portable and universal. Yet it is from here, from “successful” cases but even more from critical issues, that we need to start to imagine the future of healthcare. This is the message that emerged during the presentation of the white paper “The data. The future of healthcare. Tools for real innovation”, created by the Roche Foundation in collaboration with Edra, presented today in Rome.
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There is no doubt that the future of healthcare has to do with data. In reality, on closer inspection, even the present is governed by data: in the clinical setting for years, therapies against certain types of tumors have been based on the molecular characterization of the disease, recalled Paolo Marchetti, scientific director of Fmp – Personalized Medicine Foundation. But data that does not directly concern the clinic are also useful data, just think of those relating to waiting lists, which can say a lot about the performance of the healthcare system, but also about the requests that are addressed to a specific center rather than elsewhere and which could serve to read the reliability of the services that are provided, instead recalled Carlo Stagnaro, director of Research and Studies of the Bruno Leoni Institute. The data collected during the pandemic by pharmacists relating to the swabs carried out was also useful, which helped to follow the progress of the pandemic, as Andrea Mandelli, president of Fofi (Federation of Italian Pharmacists Orders), recalled.
There is a lack of standardized collection and processing systems
So the data is there, even if it could become more, of course. Let’s think, for example, of the possibility of easily accessing all the therapies followed by patients at the same time, to optimize the various therapeutic plans. The effort that must be made concerns the way they are collected, integrated, used. “Because if on the one hand it is clear that the future is based on digital technology, on the other it is also clear that Europe, and even more Italy, are lagging behind from a regulatory, structural, cultural and financial point of view” , commented Walter Ricciardi, professor of Hygiene and Public Health at the Catholic University of the Sacred Heart and Chair of the Mission Board for Cancer of the European Commission: “We are now making an attempt to bridge this gap with the Pnrr, not only in the health sector, but it will be an obstacle course. There is a lack of a standardized programme, not only between the different regions, but also within them”.
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Several of the experts meeting today in Rome reiterated that the problem is structural, that there is a lack of integration in the health data transfer systems. Adding that this is also the most appropriate moment to act, after the pandemic, with the occasion of the Pnrr and with the stimulus that comes from Europe, after the approval of the Data governance act and the start of the implementation phase of Regulation 536 /2014 on clinical trials, writes the lawyer Guido Scorza, a member of the board of the guarantor for the protection of personal data, in the white paper.
However, we need to change the way we think about health data: “They are not the new oil, they are not a commodity that can be bought”, recalled Alfonso Fuggeta, scientific director of Cefriel, the digital innovation center of the Milan Polytechnic. “We need regulated and institutionalized technologies, processes, collection standards and expertise. Integrating data, processing it, and making it work to create knowledge is a responsibility towards the country. How long have we been talking about a unified electronic health record? Not having an integrated system is not a coincidence, but a lack”.