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There are around 100 000 people living with epilepsy in Hungary. In addition to coping with symptoms, they also face difficulties when it comes to optimal healthcare due to the complex nature of the condition. The database, developed over several years at the University of Pécs, tries to address this challenge as it has the potential to improve the quality of life of those who live with epilepsy in Hungary. An epilepsy outpatient clinic, established in Szigetvár by specialists from Pécs, also aims to strengthen equal healthcare opportunities for people living with epilepsy. The clinic also provides residents of disadvantaged areas with access to high-quality healthcare.

Written by Miklós Stemler

Epilepsy is the most common and one of the most heterogeneous neurological diseases. The number of people living with epilepsy is approximately between sixty and one hundred thousand in Hungary. The disease not only causes many different symptoms but also requires different treatment approaches depending on brain lesions. While some types of epilepsy respond well to medication, others can only be treated surgically, and the list of the triggers causing seizures grows. Highly trained professionals are needed to treat epilepsy effectively, which means a significant challenge to healthcare systems worldwide.

– It is hardly surprising that neurology is not a medical profession that can be easily generalised as it deals with the entire human nervous system and its disorders. There are very few similar characteristics regarding multiple sclerosis and epilepsy, which means that treating patients having these conditions requires specific expertise and infrastructure. This is why epilepsy centres, where these conditions are available, have been established worldwide, yet patients must be able to access them.” – says Professor Dr. József Janszky, Head of the Department of Neurology at the University of Pécs Clinical Centre and former President of the Hungarian Epilepsy League, with whom we spoke in connection with International Epilepsy Day on 14 February.

Moving toward data-driven healthcare

There are two comprehensive epilepsy centres in Hungary, in Budapest and Pécs, providing full-spectrum care. A lot of data accumulate in connection with epilepsy at these centres, and organising them into a structured, searchable, and analysable format is one of the greatest challenges, and at the same time one of the biggest opportunities for modern healthcare systems.

– Feedback derived from real data is essential for effective patient care, and this is even more valid when it comes to the heterogeneous and complex condition such as epilepsy. So, organising them into a structured, searchable, and analysable format for experts and being able to be processed with artificial intelligence is required – emphasises Professor Dr. József Janszky, who also gives examples to illustrate its significance.

– A well-designed and continuously developed database allows us to explore rare side effects of medication, interactions between different medications, and triggers that cause seizures. Although we are aware of many triggers, there are also many that are difficult to identify, since they are rare. For example, a case might be considered a medical curiosity, if a sudden change in lighting conditions causes a seizure. But it becomes valuable knowledge that can directly help improve patients’ lives, if this information can be linked to different types of epilepsy and used to warn people living with the specific type.

The more we know, the more we can do about it

The colleagues of the epilepsy centre in Pécs developed a system designed for recording structured medical data, including several hundred parameters within the framework of the National Laboratory for Translational Neuroscience, which aims to improve methodologies of treating neurological disorders. This system contains data on thousands of patients and analysing them has already resulted in directly useful patient care.

– Thanks to this, we have become aware of the fact that certain medicines, accepted for the treatment of specific types of epilepsy, can also be effective in other types of the disease. Using the new medical record system, we analysed the long-term outcomes of patients who underwent deep brain stimulation, and we can now confirm that the procedure is not a risk factor during pregnancy. We have also verified the connection between short-term memory loss and certain types of epilepsy surgeries – lists Professor Dr. József Janszky as examples.

The database now only consists of data from patients treated at the epilepsy centre in Pécs. The next step is to expand it and gather data from the epilepsy centre in Budapest, which could be a major progress regarding epilepsy care in Hungary.

– Now, we are working on resolving legal challenges and coordinating IT systems. In case we were able to link the databases to each other, we could multiply the amount of data and analysing them could uncover hidden or unproven correlations. It could then be applied nationwide in everyday patient care. After all, science does not exist for its own sake, but to result in social benefits – emphasizes Professor Dr. József Janszky.

Equal healthcare opportunities for people living with epilepsy

This principle motivated the colleagues of the epilepsy centre in Pécs when they established the epilepsy outpatient clinic in Szigetvár. The clinic provides residents of disadvantaged areas with access to high-quality healthcare, which was not available to them before.

– The unequal geographical location of epilepsy centres, offering the full spectrum of specialists and therapies, causes challenges even in advanced healthcare systems. We experienced that a significant quantity of our patients had come from outside Baranya County and very few reach the epilepsy centre in Pécs from the small, disadvantaged villages of the southwestern region of the county due to difficulties in transportation. Following the recent change in the healthcare system, the hospitals in the county now belong to the University of Pécs Clinical Centre, which functions as a centre hospital, we decided to bring the experts to the patients as close as possible. The initiative has its results as the number of patients receiving care doubled within a year – he said.

This is thanks to the more effective diagnosis of the disease, but this is only the first step. Having specialists at local level, patients can receive new, more effective medications and have much easier access to specialised therapies which are only available at the epilepsy centre in Pécs. Professor Dr. József Janszky hopes that not only local patients will benefit from these developments in the long term.

– Patients from southwestern Baranya County and also those who belong to the health district in Szigetvár but live in the southern part of Somogy County are able to receive the same high standard of care as our patients in Pécs and its surrounding areas. This is a significant achievement in terms of equal healthcare opportunities, and I hope it can be extended to other regions of Hungary, as well.

Photo:

Pexels.com/Anna Shvets