Healthcare, who misuses our data and why. The nonsense we all pay for | Milena Gabanelli

When we talk about our health, cross-referencing fundamental data. It would be very important for each of us to have quick access from the computer to information on tests and visits, between different specialists or in other Regions without having to repeat medical checks unnecessarily or carry around packets of documents every time. Collectively, cross-referencing data serves to identify on a large scale who suffers from what, with which risk factors, and which treatments may be more effective based on N variants. And all of this is also essential to make good health planning by evaluating how the NHS responds to who needs what.

Because it happens

The administrative data on who we are is contained in the electronic health card which currently acts as a registry office for clients and belongs to the Mef. Information about our health such as blood analysis, diagnostic tests, histological reports, specialist visits, hospital admissions and access to the emergency room should have been contained in the Electronic Health Record for 10 years, but so far it did not work because the data introduced are few, they are not inserted in a homogeneous way because the company information systems are different and often very backward (manuals, Excel sheets, photographs, pdf) and each Region goes its own way (here the investigation by Computer room): only recently with the intervention of Ministries of Health, Digital Transition and Mef of the government Draghi the situation was improving (the Pnrr allocates 1.38 billion to adopt a single national health information system and give the Regions the tools and skills necessary to actually upload patient clinical data and share them between doctors, accredited public and private hospitals).
The electronic medical record it is not used everywhere and where it is used every hospital can have its own, as well as every doctor (general practitioners or specialists) and they are not always collected in an archive, i.e. they are used only for the treatment of the single patient.
The hospital discharge forms, access to the Ps, childbirth assistance certificates are contained in the so-called National information system (Sis) which belongs to the ministry of onlute.
The causes of death are contained in the Istat registers that receive them from Asl (only in some Regions is the register of mortality due to cause active).
Pharmaceutical prescriptions are monitored directly by Ministry of Healthwith the exception of the expensive drugs monitored directly byAifa. Aifa is actually an entity supervised by the Ministry of Health and from Mef therefore he works on their mandate, but with great autonomy which sometimes makes the exchange of information difficult.
Pathology registers are held byHigher Institute of Health.
The genomics databases are managed by Scientific societies and some also fromHigher Institute of Health.

Studies with limited data

The problem is that not all information systems communicate with each other or do so with difficulty. I vary database were activated at different times, with coding systems different and different computer languages. Not always present a unique codesuch as the tax code or another code that allows you to maintain anonymity, but to unequivocally identify that particular subject in order to trace its access to care without violating their identity. The consequence is that today information on the effectiveness of treatments in the field, on the risks of those who can see their disease worsening and why, and on the ability of the NHS to respond to the needs of the population are partial, are entrusted to single searchesover periods of limited timeand on groups of selected subjects.