Imagine, you live with a chronic disease and you are in another country doing meetings on business travel or you take some days off with your partner enjoying holidays and then it happens: Your disease starts to be active and you need to see a doctor. Your medical team is not available, you are far from home and the doctor you see is unknown.
Mission “care” begins: the new doctor needs information about yourself, your health and the disease, medication, allergies, last radiological results and some other important information to make sure, that you receive the care you need. Sounds overwhelming? It is.
Because all the details must be known and should be explained by you or maybe a person you know and trust. It is easy to do if you are with your family but if not, it is more difficult. It can happen, that you don’t know the language properly to explain what happens, you are not informed how known the disease is and you don’t know everything about the care system in the country. The situation can be very emotional, people feel overwhelmed and exhausted.
But it could be so easy: your electronic health record works on an EU level, which means you are able to share your data across borders whenever you need to do it. it is developed in the exchange format and enables you to share your data with your doctor. Your health data becomes visible, all details are there and your doctor can help fast. And no matter if you are in a country that is not your country, your electronic health records is already developed in the European Electronic Health Record Exchange Format and automatically translated to the doctor’s native language. (EEHRxF)
This is explained in a very easy way: The Electronic Health Record you have already on your smartphone can be shared also in foreign countries with doctors or care services to receive care as fast as possible when you get sick or have an emergency. The technical healthcare frameworks work interoperable. That means, they are able to exchange data in an easy way and are connected to make sure, that the exchange is safe and secure but also possible. To transfer health data of a person to help means more and better data to help patients, no matter if they can talk or not. If a person is senseless doctors can help in two ways, with the emergency data set and if possible, also with the data coming from the electronic health record, because this gives very often more details as all family members or carers can give, especially in this very emotional status.
For me, as a woman living with Multiple Sclerosis for more than 19 years now, it would be such a relief. Years ago, I needed medical aid and to tell the doctors in English, not in there and not in my language my “MS Story” was not easy and to be honest, I stopped to discuss with the doctor the next steps, I booked a flight back home and alerted my own neurologist to receive the care what was needed. This means a challenge, you feel sick and tired, of clarifying questions in very bad English to a doctor you don’t know is a challenge. It is difficult to describe what the problem is and also to ask for the things you would like to have. As an experienced patient, I was able to say what the next steps can be, but what happens if you are not in the stage to mention your opinion to a person if you are senseless?
Health Data are sensitive data and the story about a life with a chronic disease is much more sensitive because the decisions that a doctor makes about possible treatments or next steps can be risky or also not the best ones. The more data about a person the doctor receives, the better the decisions for the next steps are. Also, the whole process from the first “hello” to the next steps is much faster and all information is available. You can’t forget to mention small symptoms, to carry out exhausting tests twice will not happen so often anymore, because the actual results of an MRI or another test are available in your EEHRxF.
For me it would be a great relief to have that format already in my German ePA (German name of the eHR) but there is still a long way to go, to work on interoperability and regulatory frameworks and much more. But there is this huge benefit for the so-called “end-user”. For people living with diseases and also for citizens, because also they can become sick or have an accident and need to see a doctor when they leave the country.
There are many different benefits for those who use the EEHRxF. For the own disease management and also for decision-making processes or also do shared-decision making with a doctor. To be informed and to be able to inform about health and care. It is also to help us to learn about our own disease and to see if we can change behaviours or other things in our daily life. It shows the success we have while doing our treatments or therapy right. This format gives the users the freedom to travel and receive care whenever it’s needed. It gives us the independence of better decision management and it helps to have all the necessary data with us all the time.
This is also health data sharing to fasten healthcare, and diagnosis and help to make care more effective and efficient. It is to help people in alerting situations fast and effectively and also give the right information at the right moment. To have all data in place means also to answer questions correct and make your own health story understandable for new doctors.
There is still a lot to do and we will struggle with health data for a longer while also because not all country systems are already working without issues and not all of our data will be stored in the EHR, because of the huge number of documents etc. I will have that problem, but to collect future data about me and to be able to share it across borders would be very helpful because telling my 19-year-old MS story to a doctor in a foreign language is challenging and if I have a relapse then I am not in the mood to do this. And my future EEHRxF could do this job for me.
Because diseases don’t have borders. So, your health data shouldn’t have some too.
About the author:
Birgit Bauer, EDHA Academy