2023-10-23 15:55:17
The sharing and analysis of health data can improve the treatment path, according to the majority of patients (75%) and help people living with the same pathology as them (76%) as well as those who will face it in the future (79 %). About 80% know that their health data can be combined and analyzed, but 85% do not feel adequately informed. Among the various tools for collecting health data, the best known is the electronic health record (82%), followed by wearable medical devices (56%) and, at a distance, pathology registers (36%) and Pros, Patient reported outcomes (12%).
These are some of the data that emerge from the survey “Knowledge and the value of health data from the patient’s perspective” – promoted by Roche and conducted by Elma Research on a sample of 520 patients – presented today in Rome, at the opening event of the the 2023 edition of “Path – join our future”, the project that sees Roche collaborate with 50 patient associations and federations to redesign the health system. Starting from the investigation, the culmination of the event, a parliamentary “Hackathon” where, through working groups, the key actions and the appropriate parliamentary tools were identified to finalize operational proposals that will be submitted to the institutions during an institutional forum to be held next December. Various representatives of the institutions took part in the debate: the honorable Simona Loizzo, the senators Beatrice Lorenzin and Elisa Pirro, the senators Orfeo Mazzella and Ignazio Zullo.
The path of Path, started in 2021 – explains a note – led, last year, to the presentation to the institutions of a programmatic document with patients’ proposals for the reorganization of healthcare of the future, focused on 5 key themes: co-creation , territory, effectiveness, telemedicine and evidence generation and data privacy. The 2023 edition focuses on the fifth theme, relating to the value of data generated by patients, with the aim of contributing to the evolution of the health system with strategic actions suggested by associations to institutions to improve treatment paths, sustainability and equity of the National Health Service (NHS) through the enhancement of patient experience.
The use of patients’ health data and their sharing is one of the great challenges of the future that the health system is facing today, in line with Mission n.6 of the Pnrr which contemplates the consolidation of proximity networks and digitalisation growing of the NHS, in particular through tools such as the electronic health record (EHR) or pathology registers. One of the main challenges to maximize the value of the evidence generated by patients is represented by the digital literacy of the population and operators. The challenges, however, also concern respect for the right to privacy and the interconnection and interoperability between information systems used in different hospitals or in different Regions, necessary to obtain an integrated and exhaustive vision of the treatment path, but often not fully achieved, making the sharing of health data cumbersome and ineffective.
“Roche has always been a partner of the system on many fronts – states Anna Maria Porrini, director of Medical Affairs & Clinical Operations at Roche Italia – with the aim of ensuring that there is more health, today and in the future. We know that healthcare based on the personalization of care and data analysis has the potential to optimize levels of care and pursue sustainability with significant implications also for individuals. Path – he adds – offers us an additional opportunity to underline how important collaboration is, a concept that we have made our own by trying to take it to the next level which is that of co-creation. To do this, it is essential to create networks that can actively contribute to improving treatment pathways.”
Among the experts, “the need emerges for health data to be shared at a national level – clarifies Claudio Caccia, Honorary President of Aisis, the Italian Association of information systems in health – The objective is to have data that are useful both for the primary care and for secondary research and governance activities”.
According to Fidelia Cascini, Assistant Professor Hygiene & Public Health at the Catholic University, digital health expert, contact person appointed by the Information Systems Directorate (DGSISS) of the Ministry of Health and Agenas expert, “Italy is spending a lot on technologies and infrastructures to put the data in the system but still today they are used in a less than rational way. Europe is building a single harmonized model. We must not miss this opportunity.”
As Francesco Saverio Mennini, consultant to the Minister of Health, member of the working group on patient education with the Medicines Agency (Aifa) and the European Patients’ Academy (Eupati), recalls, “in the absence of an efficient database linkage becomes complicated evaluate what the economic and financial impact of certain health interventions could be. In Italy we have interpreted the privacy legislation in a very restrictive way compared to other EU countries”.
For patients, Fabio Amanti, Manager of Institutional and external relationships & Head of patients advocacy parent project Aps, highlights that “we would have preferred to start discussing a single national ESF, and not 20 different files, because we fear the same story will repeat itself which unfortunately occurred with the rare disease registry.” On the topic of information, Ivan Gardini, president of EpaC Ets. “We should think about consent forms, where there are fewer incomprehensible words and above all fewer acronyms. There is a need for awareness.” Finally, Salvo Leone, general director of AMici Ets, invites us to “build the road together with the institutions”.
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