European Health Data Space: A Health Data Space for Europe
The European Health Data Space aims to exchange health data within the European Union according to standardized rules. The goal is to strengthen the healthcare ecosystem, give patients access to their personal data and improve medical research in Europe. This article summarizes the most important facts about the European Health Data Space and related approaches.
Things to know about the European Health Data Space
The European Health Data Space – in short EHDS is intended to regulate and promote the exchange of health data within the EU. This should improve the treatment of patients throughout Europe and support medical research.
The first draft for the European Health Data Space (EHDS), presented in May 2022, is currently being discussed in the European Council and the European Parliament. The legislative process should be completed by the end of 2023, so that the EU Health Data Space can be implemented by 2025.
Goals of the EHDS
In addition to improve cross-border medical care, the EHDS is intended to give each and every EU citizen more power over their own data. Through free digital access to their health data, patients should be able to control whether and with whom they want to exchange data within the EU.
Patients should be enabled to share health data, such as images, lab results or electronic prescriptions, through their standardized electronic medical record.
Exchange of health data
What is the benefit of exchanging health data via an EU Health Data Space? Let's assume an EU citizen has to go to the emergency room outside his home country and is x-rayed.
Once the EHDS is in place, the patient can simply share this X-ray images with his physician in his home country via the EHDS-compliant platform. This helps to avoid unnecessary duplicate exposures and allows for faster onward care.
What happens to patient data in EHDS?
Patients are at the center of the European Health Data Space. In addition, the EHDS aims to promote digital health services and products as well as to exploit the potential of the health data available in the EU.
Therefore, anonymized health data shall be allowed to be used for research and development purposes as well as for policy and regulation. In order to ensure data security in the context of this secondary use and to avoid potential misuse, the European Health Data Space defines clear rules on data usage.
Towards the European Health Data Space (THEDAS)
THEDAS – Towards the European Health Data Space was launched to develop European guidelines for secondary data use. THEDAS supports EU member states and the European Commission in developing concepts for the use of health data for the benefit of healthcare, health research and innovation.
HealthDataSpace: An established health data space
The EHDS aims to make health data transparent for patients and to create easy access to data. While the EU is working on the concept of the European Health Data Space, an established health data space already exists in Germany: Telepaxx’ medical data sharing portal HealthDataSpace. Doctors can use it to share health data with patients easily and in compliance with data protection laws.
At the same time, patients can access their health data via HealthDataSpace. They can view their data via web browser or forward data, e.g. CT images, to their doctors.
Digital access to your own health data
Digital access to your own health data is not always possible in Germany: Often patient data is still distributed in handwritten files, in isolated software systems or on CD-ROMs.
Alexandra von Korff, managing director of the yeswecan!cer initiative and herself a cancer patient, illustrated just how problematic this is from the patient's point of view at Bits & Pretzels Health Tech in June 2022: "During my diagnosis, I ran from doctor to doctor and department to department with a thick folder full of papers and had to retell my diagnosis and therapy over and over again."
Digital health data as a prerequisite for modern medical technology
Current developments show: Without a data strategy - whether at European, national or company level - modern, digital health services cannot be implemented.
Therefore, clinics and physicians should consider how to manage and store their health data for the digital future. This not only enables greater efficiency in clinics and practices, but also relieves the strain on staff and improves healthcare for patients.
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