For many people it is a confusing thought to imagine your health records being anywhere other than the country in which you reside. How did they get there, if you’re not there? If you moved to another country, why wouldn’t they move with you?
For countries where electronic health records are standard, as in much of Northern and Western Europe, your data can effectively travel with you – though this is not without its challenges, as people finding themselves in emergency medical situations when abroad can testify. But what about in countries where health records are still in paper form? Where doctors’ handwritten notes form your medical history. This is the struggle that I and many others have faced receiving treatment abroad for complex medical needs.
My story begins in 2009, when I was diagnosed with the rare disease, Pulmonary Arterial Hypertension – or PAH for short. Small arteries in your lungs (your pulmonary arteries) become narrower, making it harder for the heart to pump blood through the lungs. Trying to maintain the blood flow, the heart has to pump harder, increasing the pressure in the pulmonary arteries, and weakening the heart over time. The main symptoms include breathlessness and fatigue. When the condition cannot be effectively managed with pharmacological treatment, a double lung transplant is the only answer for survival.
In my home country in Bulgaria, not only is there no access to modern pharmacological treatment such as IV therapies for my condition, but the expertise and equipment needed to conduct the highly complex and risky procedure of a double lung transplant is not there either. So, you need to convince the authorities that you require treatment abroad. Even for somebody who felt well, the amount of paperwork would be overwhelming. When you can barely take your next breath, it is a nightmare. The entire process from evaluation tests to the operations took one year and 4 months and when I finally received the call about a donor situation, 11 months after waiting on a transplant list and becoming increasingly convinced that my ‘time was up’, I had to travel to Vienna, Austria for the procedure. I am extremely grateful to the Austrian healthcare system, because all the logistical details were perfectly organized. For the first time a Bulgarian patient was transported by medical aircraft to Vienna.
Waking up from the transplant was an amazing experience – it felt like I was flying. After not being able to breathe for so long though, I actually had to relearn to breathe in and breathe out. It took me about three months, in the care of the hospital of Vienna. Beyond the operation itself, which was paid for by the Bulgarian health authorities, everything else had to be covered by myself and my family. This is one of the contradictions of cross-border care. We are lucky in Europe to have the option to travel to nearby countries for care, but there is not a clear pathway for funding nor in fact, data sharing.
I will remain a transplant patient for life and require regular visits back to my care team in outpatient centre in AKH, Vienna (at my expense for travel and stay) to ensure that everything is going well. My team in Vienna keeps a record of my transplant history, but my doctors in Bulgaria do not have this critical medical information for me. The records are in physical form and as a patient, the responsibility falls to me to keep meticulous notes myself and physically transport these to and from my different healthcare teams.
The proposed European Health Data Space, to promote health-data exchange and support research on new preventive strategies, as well as on treatments, medicines, medical devices and outcomes across Europe, is an important step. However, for those countries that don’t have electronic records, how can we expect to be included? Who will manage the process of transferring all paper records into electronic form? And if this process isn’t completed, will the gulf between care across borders only widen?
When so much of the conversation is centred around the safeguarding of data when it is shared between different parties, it is easy to forget that it is a privilege to share data full stop. To have systems that can speak to each other and facilitate the transfer of important health information that allows healthcare professionals to make informed recommendations for your care in everyday and emergency scenarios.
My most important health data lives in a different country to me. As we work towards a shared health data space, we need to consider the different forms of data, existing cross-border patients and how we can create a truly inclusive space that takes non-digitised healthcare systems into account.
By Natalia Maeva, President of the National Patients’ Organization (NPO), Bulgaria