We produce them all the time: every time we carry out tests and analyses, we undergo diagnostic imaging, even when we calculate our pulse or check our blood pressure in the pharmacy. Tons (so to speak) of medical data generated by millions of citizens in Italy alone. What to do with them and how to protect them from distorted uses were the themes at the center of the inaugural event of “PATH – Join our future”, the initiative which since 2021 has seen Roche and 50 patient associations and federations collaborate to suggest strategic actions to the institutions intended to improve care pathways, sustainability and equity of the NHS by enhancing the patient experience.
Patients without information
The majority of Italian patients think that data are important for improving the therapeutic experience: the survey “The knowledge and value of health data from the patient’s perspective” conducted by Elma Research on 520 people with the disease, shows how 75 percent of the sample believes the sharing and analysis of health data is useful, not only to strengthen their own therapeutic experience but also to help people living with the same pathology and those who will face it in the future (79%). And yet, the survey reports, there are many, too many people who do not feel adequately involved: around 80% of those interviewed are aware of the fact that their health data can be combined and analysed, but 85% do not feel quite knowledgeable about it. Among the various tools for collecting health data, the best known is the Electronic Health Record, indicated by 82%, followed by wearable medical devices (56%). Few, however, know about Pathology Registries (36%) and PROs, Patient Reported Outcomes (12%).
by Elisa Manacorda
A new informed consent
For this reason, the digital literacy of the population and operators appears to be a priority. An awareness that also serves to explain to citizens who can collect the data and what use they can make of it: “It must be explained clearly to the patient what is written when informed consent is requested and it must be explained to whom the data is given. We should think to consent forms, where there are fewer incomprehensible words and above all fewer acronyms. Having a consent that is filed with the general practitioner, and recorded in the Electronic Health Record, which illustrates to the patient all the potential linked to the anonymous sharing of their data , can only bring advantages”, he underlines Ivan GardiniPresident of the EpaC – ETS Association.
A unique collection system
The challenges also concern 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. “Data collection in our country has always been fragmented, as is the National Health Service. Serious data collection allows data to be interoperable, and therefore can be easily exchanged: it is important that action is taken on this, precisely to allow science to take its steps while enjoying health data”, he comments Antonella CelanoPresident of APMARR APS – National Association of People with Rheumatological and Rare Diseases.
by Valentina Arcovio
Right to privacy
One of the critical points is naturally that of the right to privacy. And yet, remember Guido Scorza, Member of the Board of the Guarantor for the protection of personal data, “it is not privacy that prevents the circulation of data and their sharing, but the jealousy of the data on the part of those who hold it. It is a bad habit to eradicate and, on the other hand, the very title of the GDPR explicitly refers to the free movement of personal data. The objective is therefore to identify rules capable of balancing rights that must never be in conflict. A citizen should never be asked to choose between the right to health and the right to privacy.”
Proposals for the future
Starting from the Elma Research survey, therefore, representatives of patient associations, members of institutions, parliamentarians and experts discussed the most sensitive aspects of health data collection: what advantages they can generate in patient management, but also who can collect them or have access to it. At the same time, some parliamentary working groups have identified the operational proposals to be submitted to the institutions during an institutional forum to be held next December.