So more than half of Italians still 'block' their electronic health record

There is a small important silent revolution that is advancing slowly and hiccup-like, but which is now close to its first milestone: at the end of next March, the electronic health record - the digital treasure chest containing our entire health history - will be fully operational throughout Italy. This is what is envisaged by the NRP, which has earmarked 1.3 billion to make it truly operational and useful for everyone: first and foremost, for doctors and patients, but also for those institutions - from ministries to research centres - which, thanks to the launch of the health data ecosystem that will draw precisely from our health files, will be able to do better prevention, planning, and scientific activities, also with the help of artificial intelligence.

However, this is a breakthrough that many, too many, Italians still do not know about, given that as of 30 September - according to the latest official monitoring just published - practically only one Italian in four (27%) had accessed their electronic health file at least once in the last 90 days. But above all, less than one out of two (44%) gave their consent for their data to be consulted by healthcare personnel in the file, where they can find the latest tests carried out, examinations, medicines they usually take, emergency room reports, up to previous hospitalisations or the 'patient summary' (a sort of brief identikit of the patient). The citizens of the South are the ones who snub the health file the most: while 64% of people from Emilia and 53% of those from Lombardy frequent it, in Apulia and Sicily only 3% do so, while the consensus ranges from 92% of people from Emilia and 89% from Veneto to a meagre 2% from Calabria and 3% from Campania.

A big information gap on the electronic health record, which the government and the Ministry of Health now want to try to fill with an information campaign that should start in the coming weeks and reach all information channels. Informing citizen-patients is crucial, because knowing, especially in emergencies, whether a patient has an allergy, is taking a life-saving drug or suffers from a serious chronic condition can make all the difference. A possibility at the click of a mouse for doctors and nurses, but one that risks being precluded if citizens have not given their consent to access the health data contained in the file This non-adherence is in fact much more than a simple bureaucratic formality born in the name of defending patients' right to privacy. Because without citizens' consent, the electronic health record is practically unusable in hospitals, doctors' surgeries or offices, and even in emergency rooms, when for health workers having one more piece of information in a very short time can be crucial in saving a life.

The short-circuit is caused precisely by this step without which the file cannot be accessed by health personnel: failure to consent to consultation obviously does not block the services to which one is entitled, but the data and documents contained therein 'are visible only to you and the doctor who produced them and will not be accessed for the purposes of diagnosis, treatment and rehabilitation, international prophylaxis and prevention', warns a message written somewhat in bureaucratic language that appears when one opens one's file where one can always 'flag' one's consent.

Access to a patient's health data - according to the latest rules governing its operation (Ministerial Decree of 7 September 2023) - would theoretically be possible, albeit in a limited way, in emergency cases such as arrival in an emergency room: in these cases doctors and nurses can in fact consult at least the so-called 'patient summary' in which each GP should briefly describe the condition of his patient, such as the presence of a pathology and the therapies chosen to treat it.