Patients move around Spain, their clinical data does not: “Sometimes we have to attend to them blindly” | Society

A middle-aged lady is unconscious in the center of Seville. A few minutes later an ambulance arrives to treat her. The doctors don’t know anything more about her than what she puts on her ID: name, address, her age. She’s not from the city, she’s probably out of town. They have no way of knowing anything about her medical history, or her allergies, so they give her whatever medication seems relevant at the time. “You do it hoping that nothing will happen,” acknowledges José Manuel López, the doctor from 061 outpatient care who treated her. But this time she passes. The patient reacts with bronchospasm, a respiratory difficulty caused by the drug, to which she turns out to be allergic.

In Spain, in the third decade of the 21st century, the medical records of patients are not interconnected between different autonomous communities (with some exceptions). Often, neither between provinces or health areas. And, sometimes, neither between a hospital and a health center in the same city.

This produces situations like the one that happened to López with that lady in Seville, who luckily was treated without major complications and overcame both her fainting and the allergy caused by the drug. And it is not an isolated thing. “In a tourist city like this, we often find cases of people from outside who we serve blindly because we cannot access their history, not even a small summary of the most basic things,” laments this doctor.

Two toilets in the Goya health center, Madrid.
Two toilets in the Goya health center, Madrid. Carlos Rossillo

The lack of medical records that any doctor can easily access in Spain is not just a bureaucratic problem. It affects patient safety, duplicates consultations and procedures, and sometimes requires repeat tests that are not innocuous. María Robles, a family doctor from the Balearic Islands, gives an example: “A patient from another community comes to us, who has had a colonoscopy, and we have to repeat it because he does not have the results and we cannot consult them.”

More time, more resources, more money and a decrease in the health of patients. An inequity in the care suffered by those who cannot always be cared for in the same place. “It is absurd that the system is not interconnected. The patient travels, but their data does not, when they have a health card that works in any pharmacy in Spain. They have the information there, but in the health center they cannot know what they are taking”, denounces José Polo, president of the Spanish Society of Primary Care Physicians (Semergen), which this week held its annual congress in Seville and at the that EL PAÍS has attended invited by the organization.

How is it possible that something so apparently simple is not possible? One factor is that health information is very sensitive, and data protection makes it hard to access from anywhere: the data belongs to patients, even if they are not easily accessible. There are mechanisms to circumvent this problem. Salvador Casado, a family doctor in the Sierra de Madrid, explains that each autonomous community invested in its own computer system and that they do not speak to each other. “It costs a fortune to make them homogeneous and connect them,” he says.

But even in the same community there are problems. He experiences it daily: “In the interconsultation reports, my information reaches the cardiologist, but his does not reach me. I have to find nooks and crannies to get into the hospital. If it’s the one in Villalba, I can do it, but in others I don’t have any access. I use mail patient; if he has a piece of paper I ask him to bring it to me, but sometimes they have lost it or can’t find it”.

The same thing happens with vaccines that are not the covid one, which do work with an interconnected system. Carina Escobar, president of the Patient Platform, recounts how some with immune system problems, which have to be particularly controlled, simply have a booklet that they themselves must update. “My hospital has the data, but if I go to another, no. And in 10 years that can go by between doses, I can forget that I have to get a new one or which ones I get, ”she explains.

Patients become messengers. They are the ones who have to transfer to a doctor what another told them. But, as Esther Soler, a family doctor in Mallorca, points out, this causes problems: “We communicate in our own language. What a patient tells you is what he has understood and interpreted, and it is not usually very precise and reliable; he tells you his way.”

This is one of the reasons for repeat queries that could be avoided. Or even tests. Catalina Romo, who works in a health center in Seville, recalls a recent case: “A patient who had a cerebral stroke and bilateral cerebral thromboembolism. It had gotten very complicated. And they were doing oncology and coagulation tests. He had many made, but we didn’t have them here. In some cases, the reports he brought were enough for us, but in others we had to repeat them. So that causes diagnoses and treatments to be lengthened and causes iatrogenesis, you are unnecessarily harming the patient. If, for example, you have to do a CT scan, which gives a lot of radiation, repeating it is unnecessary damage.”

Plans for an interconnected story

This same month, the Ministry of Health has presented a plan for Digital Care in Primary Care to the autonomous communities. One of its objectives is precisely to expand and streamline the digital medical record. The program has a budget of 70 million euros in 2022 and 160 in 2023, but the department of Carolina Darias does not specify when the digital medical record will be able to be fully interoperable throughout Spain, which is immersed in a European project for this to be a reality throughout the EU.

Some communities move forward with the support of community plans and the central government. The Departments of Health of Castilla-La Mancha and the Canary Islands are working on an interoperability plan that, according to those responsible, “will improve the care response for patients by providing an essential tool for professional work, regardless of the health service to which it belongs” . It is a development that began in 2021 and should end in 2023. Another question is when it will be extended to the others.

Private health also has its own plan, and hopes that patients can see all their tests within a few months. The IDIS Foundation, which represents the large companies in the sector, has been asking Health for years to include its patients in an interconnected information system, with the authorization of those affected and respecting their privacy. Without the 11 million users of the private sector, they argue, interoperability will not be complete. “An interoperable clinical history will only exist with the harmonization of all patient data. And these data come not only from public health care centers, but also from private health care services, from public and private socio-health care centers or from the pharmacies themselves, all of which are agents to be taken into account, since they are part of of the health infrastructure in our country”, they point out.

Rafael Micó, vice president of Semergen, explains that a group of scientific societies are working with the ministry to advance the interoperability of medical records, but he does not believe that it will be ready in the near future and it seems inconceivable that “in the middle of 2022” it will not be a reality “today”. “If we can pay with the mobile anywhere, could we not have a card with all our medical history?”, He wonders.

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