Why data availability is the foundation of digital care

When it comes to digital solutions in healthcare IT, data availability is one of the key components. One can create the smartest software to improve healthcare in general, but if the data that is required to achieve that goal is not available, one cannot use that data in the software. What’s left then, is like shopping in a supermarket with only empty shelves…

Data availability consists of three components:

• Data must be insightful.
• Data must be usable – in other words: of sound quality.
• Data must be relevant.

For starters, a healthcare provider must have insightful data within their own organisation. However, it should also be insightful outside the organisation, i.e. to other healthcare providers. If a general practitioner adds information to a patient file, a different doctor at the hospital should also be able to see it.

Second, data must be usable, so it must be of sound quality. This means inter alia that data should also be understandable, both to the healthcare provider and the patient. Through PHRs [Personal Health Records], healthcare records are being made increasingly visible to patients, and it is of no use to a patient if it is incomprehensible.

And finally, data must be relevant. This means that a healthcare provider should be able to easily access or view the specific information that is required for treatment. A healthcare provider works based on a process or a context, so they do not need irrelevant data.

Rights to view data

Data should be allowed to be available only if the patient has given their consent. Currently, a doctor may access data that they require to provide care. Yet if e.g. an X-ray needs to be shared with another healthcare provider, explicit consent must be given to do so.

All kinds of initiatives have been under way in the Netherlands for years now to streamline these ‘patient consents’ in such a way that citizens retain control over their consents. Yet at the same time, as a healthcare provider, you don’t want to run into a situation in which you require information and find that the patient has not given permission to share data in the past. The challenge for healthcare in the Netherlands is to roll out a workable solution for this situation that is privacy-proof. Great strides are currently being made in this regard, but we are not there yet.

Time for the next step

A lot of information is already currently being exchanged within the healthcare sector, across various domains. It is now time for the next step to be taken in that process. This includes a commitment to recycling – to build on what is already there – on the one hand, and to work towards more data availability on the other. What is important in this respect is that a lot of initiatives are currently emerging with regard to data availability, but that a certain focus and prioritisation must also be applied in order to achieve precisely the goals collective that has been set.

Information exchange also major issue at European level

The exchange of information within the healthcare sector is currently also a hot topic at the European level, which is also why Enovation strongly believes in embracing international standards that are scalable and sustainable. Currently, the European Health Data Space (EHDS) is available for this purpose. This EHDS should allow citizens in Europe to open up and share health data across borders.

It ensures the secure re-use of data for research and innovation while at the same time establishing a harmonised framework for EHR (Electronic Health Record) systems. This, in turn, promotes cooperation between systems and progress in EU healthcare.

EHDS legislation came into force in March 2025. The goal is for all European member states to comply with the EHDS by 2031. To achieve that, a lot of work remains to be done in the next six years. A total of five types of use are explained, namely ‘Patient Summary’, ‘ePrescription & eDispensation’, ‘Imaging’, ‘Laboratory’ and ‘Discharge Report’.

Enovation is involved in this kind of process and keeps a close eye on it. After all, it is a promising and important development.

Enovation Platform

The Enovation Platform provides a platform to unlock data, standardised to the new and to current formats. Ultimately, that data is rendered suitable for exchange via relevant infrastructures and appointment systems. We have been doing this for over 40 years.