2023-12-13 19:33:44
by Francesco Di Frischia
The request made by patient associations to institutions. Experts, doctors, political representatives and patients met to face the challenges of the economic sustainability of the health system
A widespread and effective use of health data as the key to improving treatment paths, scientific research and health planning by listening to the patient’s voice. To do this, among other things, literacy and the involvement of patients and health professionals are needed; systematization and interoperability (interconnection) of collection tools; greater discretion of patients in terms of privacy. These are the main topics of the requests from the patient associations of the Path – Join our future group to the institutions, which emerged during the meeting organized in Rome on Wednesday 13 December.
During the initiative, the results of a survey were disseminated, conducted by Elma Research in the summer of 2023 on a sample of 520 patients suffering from a heterogeneous set of pathologies: according to the research, patients know very little about health data: the In fact, 46% declare themselves not at all informed. This condition creates doubts regarding the sharing of health data and generates the need to receive more information. Among the various tools for collecting health data, the best known is the electronic health record, known to 82% of the survey participants. This is followed by pathology registers (36%) and patient reported outcomes (Pros with 12% of preferences). Active and systematic listening to the patient represents a priority challenge that the health system must face – the experts said – to respond to the evolution of society and medical technologies. An even more current challenge in light of the agenda established by the National Recovery and Resilience Plan (Pnrr), which has among its objectives the growing digitalisation of the healthcare system.
Fidelia Cascini, professor of health hygiene at the Cattolica and digital health expert of the Ministry of Health, speaking of the new European Regulation on health data, recalls that this is a special regulation to improve the provision of health services and health research and policy: the characterizing elements are the accessibility to data, which today is very fragmented, due to many technical and regulatory problems, the data economy, that is, the construction of a functional investment system based on data to obtain greater growth and greater well-being for the citizen and for Europe, and citizens’ rights, both understood as the right to information, to choice and to self-determination regarding the use of data for treatment, but also for secondary use, that is, choosing the purposes, directing generosity and the altruism of the data towards certain purposes that serve for the improvement of European and national healthcare systems. Italy is very active both at a European and national level on these fronts – specifies Cascini -. We care a lot about our position within the European regulation. Explaining how it is possible to increase patients’ empowerment on the use of health data collection tools and help them take control of them, the expert pointed out that this should be a system that involves different protagonists. We should start with those who produce the technological tools and invite them to co-create the tools themselves with patients, for example apps which must then be used easily by the user. And then there must be very widespread and simple communication in a systematic and institutional way to make people understand the central role of the patient as protagonist of their own health.
Thoughts shared by Francesco Saverio Mennini, consultant to the Minister of Health and member of the Path: Health data are fundamental for planning: the Ministry has taken the path of returning to planning, that is, measuring, monitoring and collecting information and data not only outcomes and outputs, but also above all those relating to the European Regulation on quality of life and patient perception. This may represent a fundamental turning point for collecting the information necessary to give real, economic and social value to those technologies that will be introduced and approved by AIFA and the Control Room with regards to medical devices. Furthermore, it is necessary to ensure that the methodology linked to treatment outcomes (the Pros, Patient reported outcomes, ed.) is validated by scientific societies, in mutual agreement with Aifa and Agenas, in such a way as to insert this information into the economic evaluation of drugs and medical devices – added Mennini -. In this way the institutions could better plan the expenditure calculated on the basis of real needs.
Paola Zarattin, director of scientific research of the Italian Multiple Sclerosis Association (Aism-Fism), thought it was best to give patients a voice: The research presented demonstrates that patients do not know the data and the importance of data collection. Therefore, the right time to get involved and to ensure that this data is produced and used to make decisions by institutions, both in the field of research and in the field of assistance. On the role played by the patient associations, Zarattin said that there is a common thread that unites the data with the patients and it is precisely the associations that have a representative role of the patients and can contribute to making citizens literate and making them understand the importance of use of this data.
This is the time to move towards personalized treatments and truly effective prevention programs – underlines the multiple sclerosis expert -. Not a trend, we must do it to stem the direct and indirect costs of health that grow every year: to achieve these results we must use patient data and involve them. In particular, the data called “reported patients”, that is, on the experience, symptoms and treatment path: these data are so important because we must demonstrate that therapies and treatments have an impact on the person and can prove to be very significant indicators in research and treatment paths that we will develop. Without this type of approach, medicine cannot go in the direction it needs to take. This experience must be capitalized and delivered to researchers, clinicians and institutions who can then make it usable to improve care. Associations such as the one on multiple sclerosis must sit at the table with the institutions – asks Zarattin – when healthcare planning decisions are made, because only the associations have in-depth knowledge of the disease, the problems and the specificities of the services and the life of the patient. Only by following these methods can we make the National Health System survive.
Roche, with the Path project, now in its third edition, confirms its commitment to promoting listening to the voices of patients, involving the associations that represent them in the decision-making processes of the Health Service – explained Luisa De Stefano, head of patient Partnership , Roche spa -. We are convinced that the personalization of care necessarily involves listening, sharing and using health data along the entire patient journey. The patient thus becomes a precious ally with whom we can improve treatment paths.
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December 13, 2023 (modified December 13, 2023 | 6.33 pm)
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