Patients move around Spain, their clinical data not: “Sometimes we have to care for them blindly” | community

A middle-aged woman is unconscious in the center of Seville. A few minutes later an ambulance arrives to help her. The doctors know nothing more about her than what is written on her ID: name, address, age. He’s not from the city, he must be on tour. They have no way of knowing anything about your medical history or allergies, so they give you whatever medication seems appropriate at the time. “You do it in the hope that nothing will happen,” admits Jose Manuel Lopez, the 061 outpatient doctor who treated her. But this time it’s happening. The patient responded with bronchospasm, a respiratory distress caused by the drug to which she was found to be allergic.

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

This creates situations like the one that happened to Lopez with that lady in Seville, who fortunately was treated without serious complications and overcame both her fainting spell and the allergy caused by the drug. And this is not an isolated thing. “In a tourist town like this, we often find cases of outsiders whom we serve blindly because we don’t have access to their history, not even a brief summary of the basics,” laments this doctor.

Two toilets at the Goya Health Center, Madrid. Carlos Rossio

The lack of medical documentation that every doctor has easy access to in Spain is not just a bureaucratic problem. This affects patient safety, duplicates consultations and procedures, and sometimes requires repeat tests that are not harmless. Maria Robles, a family doctor from the Balearic Islands, gives an example: “A patient comes to us from another community who had a colonoscopy and we have to repeat it because he doesn’t have the results and we can’t consult them. “

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

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

But even within the same community there are problems. He experiences it daily: “In the protocols of the interconsultation, my information reaches the cardiologist, but his information 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 access. I use mail patient; if there is a sheet, I ask him to bring it to me, but sometimes they lose it or cannot find it”.

The same happens with non-covid vaccines that work with an interconnected system. Karina Escobar, president of the Patient Platform, tells how some with immune system problems that need to be especially controlled simply have a booklet that they have to update themselves. “My hospital has the data, but if I go to another, it doesn’t. And in the 10 years that can pass between doses, I can forget that I need to take a new one or which ones I need to take,” he explains.

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

This is one cause of duplicate requests that can be avoided. Or even tests. Catalina Romo, who works at a health center in Seville, recalls a recent case: “A patient who suffered a stroke and bilateral cerebral thromboembolism. It had become very complicated. And they did oncology and coagulation tests. I had many made, but we didn’t have them here. In some the reports he brought were enough for us, but in others we had to repeat them. So it prolongs diagnoses and treatments and causes iatrogenesis, you unnecessarily harm the patient. If, for example, you have to do a CT scan, which gives a lot of radiation, the repetition is unnecessary harm.

Plans for an interconnected story

The same month, the Ministry of Health presented a plan for digital care in primary care to the autonomous communities. One of its goals is precisely to expand and rationalize 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 did not specify when the digital medical record will be able to be fully interoperable throughout Spain, which is immersed in a European project to be a reality across the EU.

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

Private healthcare also has its own plan and hopes patients will be able to see all their tests within a few months. The IDIS Foundation, which represents the major companies in the sector, has for years asked Health to include its patients in an interconnected information system, with the permission of those affected and respecting their privacy. They argue that without the 11 million private sector users, interoperability will not be complete. “An operationally compatible clinical history will only exist with the harmonization of all patient data. And these data come not only from public health centers, but also from private health services, from public and private social health care centers or from pharmacies themselves, all of which are agents to be considered because they are part of the health infrastructure in our country”, they point out.

Rafael Miko, vice president of Semergen, explains that a group of scientific societies is working with the ministry to advance the interoperability of medical records, but he does not believe that this will be ready in the near future and it seems unthinkable “in the middle of 2022” no to be a reality “today”. “If we can pay with our mobile phone everywhere, couldn’t we have a card with all our medical records?” he asks.

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