The counterpoint is once again between the health system and the individual: the law for the digitization of medical records, approved a few days ago by Congress, triggers doubts among those who object to the possibility that these data, in a fragile country in the protection of confidential information, can be used to the detriment of patients.
“More than benefits, there are cons,” says lawyer Martín Leguizamón, specialized in new technologies. It would be necessary to create sufficiently effective and inviolable software, which is difficult. They entered the Pentagon, imagine”. The new law, which was approved on the closure of extraordinary sessions, on the 28th of last month, should not interfere with the scope of two others: that of personal data, a rule that is not always paid enough attention and has been in force since 2000, and the patient’s rights, approved in 2009.
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But Who guarantees that, for example, a study to detect genetic mutations, something increasingly frequent in the world, cannot turn against the person who did it just with the idea of knowing if they have a propensity for any disease? For prepaid or potential employers, that sensitive information is gold dust: knowing that the would-be patient or employee is susceptible to diabetes or cancer and, therefore, will have a more expensive labor or coverage cost than who seems to have the future toilet cleared. The advance of science could thus anticipate part of what until then did not happen, which is the probable or future life. That is, replace the random, on which any insurance is built, with something close to a forecast. The most famous case in this regard is that of Angelina Jolie, who in 2013 was detected in 2013 with an 87% propensity to develop breast cancer and a 50% risk of uterine cancer: she then underwent interventions before have it.
The law that has just been enacted, No. 27,706, establishes the creation of the Single Federal Program for Computerization and Digitization of Medical Records. “In order to establish progressively –describes the text–, the unique electronic medical record registration system, respecting the provisions of chapter IV of law 26,529 on patient rights and by law 25,326 on the protection of personal data”. It is the dream of several sanitarians, such as the Buenos Aires Minister of Health, Fernan Quiroswhich has applied a similar system for two years in all public hospitals in the city of Buenos Aires. The new scheme aims not only to facilitate care, but also to reduce costs and avoid multiple errors that, say the defenders of the law, even cause deaths due to lack of information about those who receive care in health centers..
The first step, which is stated in article 2 of the text, will be convene an interdisciplinary commission of experts to discuss the scope, which will be in charge of Fabián Puratich, Undersecretary of Health Systems Integration of the portfolio led by Carla Vizzotti.
For now, given the implementation difficulties, the objectives seem rather modest. It is intended to put together a list of health centers with digital information and agree on standards and nomenclatures: Although it seems unlikely, a medicine, a disease and even a sanatorium are not called the same way throughout Argentina.
The idea is quite old. It was approved two years ago in the Senate based on a project by Chaco’s official Antonio Rodas and became law on February 28 in the Chamber of Deputies with only two votes against, those of Javier Milei and Victoria Villarruel. “Unfortunately, only two deputies understood that the mandate of the citizens implies voting in accordance with the interests of the Argentine people, and not of the political caste,” Villarruel told THE NATION–. The medical record should not be manipulated or handled by the State. This is very personal and sensitive information of each patient and part of the doctor-patient secret. While the State cannot guarantee access to health, it is preparing to execute a program of indefinite cost. Besides, The computer security of the Argentine State has already suffered hacking or intrusions: if the Renaper database has been accessed, the same can happen with the medical records. A government that cannot efficiently carry out the mandates of the Constitution should not have access to information that, if made public, violates human rights.”
The project had the endorsement of all the rest of the opposition. “The clinical history is very important in the health system, and sometimes the doctors do not even write it down,” says Graciela Ocaña, one of the votes in favor–. It is also the responsibility of the provinces. The Argentine system is fragmented, there is no competent authority to manipulate them”.
A global challenge
Proper enforcement is still a challenge even in nations where data protection works well. In the United States, for example, the Electronic Health Record System It has been a concern for administrations since it began in the late 1990s. It is supposed that the unified databases, something to which Barack Obama aspired since 2009 with the Hitech law, of incentives for digitization, should provide a solution for the two million annual medication errors that cause around 100,000 deaths in hospitals. of the country and, as a consequence, additional health costs of more than 20,000 million dollars.
However, these changes have not yet been able to be applied in the best way in practice even in the world’s leading power. On the contrary, according to surveys, the perception of many doctors is that the centralized modality is not only limited in scope, but also has difficulties: it wastes time, it complicates the patient’s life, it sometimes collides with laws that are intended to protect privacy and deficiencies have even been detected that lead to fatal errors in care.
Some of this debate accelerated with the pandemic. In the 73rd World Health Assembly, in 2020, the WHO emphasized the concept of “digital health”. But progress has not been uniform: digitization of data is one thing and the existence of unique software is another. A recent report from the European Commission indicates that 80% of the countries on that continent have passed legislation that provides patients with access to their data, and that 18 of them already allow them to be shared across borders, but that only the Czech Republic, Lithuania, Latvia, Poland and Slovakia actually have what is called interoperability: they can send and receive summaries of each record to other nations.
In Argentina, the main challenge is the vulnerability of systems prone to leaks. It is not necessary to go through episodes such as money laundering or the VIP vaccination to warn that the new law could become a scalpel in the hands of a chimpanzee. In October, a hack through the email of an employee had the Ministry of Health in suspense, from which alleged data on meetings between Tinelli and Jorge Rial with officials and even a list of patients with HIV came to light. Almost simultaneously there was a cyber attack on the Argentine Institute of Diagnosis and Treatment, from which an anonymous person demanded a million-dollar sum in bitcoins in exchange for returning the data, a coup that took him three months to reorganize shifts, and another similar one to the prepaid OSDE.
The Argentine health system
The Argentine health system is also quite far from having a complete digital order. Almost 80% of health centers do not have digitized medical records, but on paper. “The great ambition of the whole world is a centralized and digital system, but it is expensive and there is also a habeas data issue that should be resolved,” they told LA NACION in a first-line sanatorium. It is one thing to digitize and another to create a unique system”. In another health center in the Capital the following coincided: “The law is good, but it always depends on who is in the hands of it and how it is used.”
Gerardo Figueroa Paredes, president of Caprescothe chamber that brings together private clinics in the province of Buenos Aires, still sees it as a positive step for the sector. “From a practical point of view it is very positive. There are people who still go to the doctor with a bag full of papers with their medical history. This is going to force us to digitize”, says Figueroa Paredes, shareholder of clinics in Mariano Acosta, González Catán, Laferrere and Isidro Casanova. The businessman warns, however, that the new modality should have significant shielding and protection to prevent abuse. For lawyer Leguizamón, on the other hand, there are no advantages even from a practical point of view: “Doctors should spend all day uploading data,” he says. The risk is that the system is in the hands of unscrupulous people who profit from it. In Argentina, today it is inapplicable”.
The unknown then is how to stir up the tension between the system and those who sustain it, who are the patients. With the advancement of medicine, some have even been able to anticipate the appearance of symptoms. Could an invaluable and intimate piece of information turn out to be a trap? The challenge once again is that science does not attack those who make it progress: man.
