Why does it matter that all EU citizens have their medical records at their hands?

At Data For Patients[1], because we spend so much time focusing on patients and their data, we often get asked why we care about data so much. We don’t really – data is only a tool, but a live saving one. Personally, I care about the people close to me. Unfortunately, several of them are dealing with serious medical issues. Because of this, I care about the healthcare they are getting. And that’s where data comes in. We all know doctors, nurses and pharmacists take notes and update our medical records when we visit them, or lab results come in afterwards. That’s because, as soon as you leave that hospital or pharmacy, your medical records represent you. The healthcare system will organise itself around your data. That’s why your data matters – it needs to be complete and up to date so it reflects you fully and you need to have it available each time you need healthcare support. This becomes even more important when you need to deal with different medical problems with help from healthcare professionals working in different organisations with different IT systems. By having our medical records at our hands, we can engage our care teams confidently, knowing they all have the same and up-to-date information on us. Europe is leading this patient centric data approach and the EUDI Wallet will be a key tool for EU Citizens to access their medical records from anywhere in Europe. It’s the right thing to do for patients, as healthcare will become ever more digital the coming years, which will make our data even more important to the quality of our care than it is today.

How will myHealth@myHands make a difference?

In addition to accessing our medical data, the European Health Data Space provides us new rights to our medical data, such as seeing who has accessed our data, request rectifications of data when we notice errors, and adding information to our health records. The plan is for the EUDI Wallet to make it easy for EU citizens to exercise these rights across the EU. It should make having your data available to you whenever you have need for it a lot easier and more secure.

How is Data For Patients helping this project

We co-lead the Health Co-Management Work Package together with the Irish Ministry of Health, where we focus on supporting the project across all its activities in designing and maintaining the focus on the citizens and healthcare professionals as the Wallet end-users. We lead co-design conversations on new functionalities and consolidate patient and HCP perspectives at the overall project level, supporting the overall direction of the project and engage externally on behalf of the project. Top line, we represent the end-users in this project at the overall project leadership level, which is a big responsibility we carry with pleasure as it aligns perfectly with our mission at Data For Patients.

Author: Kristof Vanfraechem (DFPR)

Keywords

Data, health data, medical records, digital health, citizen involvement, empowerment

[1] Official name: Data for Patients Research (DFPR)