Carla Meeuwis was recently appointed user chair of IHE Netherlands. In that role, she calls on healthcare providers to get much more involved in the interpretation of the EHDS. “Healthcare providers themselves will have to take the lead and indicate what a user-friendly healthcare information system should look like.” In her work as a radiologist at the Arnhem Rijnstate hospital, Meeuwis still sees far too often that patients have a poorer outcome, or even die, because the physician team did not have all the information at the time of decision. To do something about this, she holds various ancillary positions.
For example, in addition to being user chair of IHE Netherlands, she is also a member of the standardization reporting working group of NABON (Nationaal Brestkankeroverleg), secretary of the Dutch College of Breast Imaging (DCBI), sits on the breast cancer guideline committee and in the Digital Health working group of the Standing Committee of European Doctors (CPME).
In all the ancillary positions, she tries to make the physician's voice heard. The ancillary positions also have a lot of common ground. “For the latter role, I often visit Brussels and then I notice every time how important the international IHE exchange profiles are in the development of the EHDS,” she gives an example.
EHDS profits
Meeuwis cannot wait for the EHDS to actually go into effect soon. After all, data availability is not about manually retrieving a patient's data from all kinds of sources. But: having all available data on a patient at hand in one place.
“I specialize in mamm diagnostics. We worked incredibly hard with NABON on an information standard that the various suppliers can build into the various systems (such as the EPR, the breast cancer population screening system, radiology pathology systems, etc.). By not using free text fields but storing data in a structured way, you can reuse it more easily. At least that was the idea. But what happens in practice? We now have to retype our data box by box, instead of being able to copy-paste an entire block of text. So we have saddled ourselves with a huge administrative burden. At the end, we also have to re-type all that data into Excel sheets for external justification in the various record systems.”
The EHDS is going to put an end to this practice. If the European regulation is adopted in 2025, it will take up to six more years before all vendors must have their systems open and facilitate frictionless data exchange between systems.
“That not only takes away a lot of administrative hassle, it also ensures higher quality of care,” predicts Meeuwis. “Because as I just said, it still happens far too often that we make the wrong decision because we don't have all the data at the time of decision. That data is there, but it's just not in the right place at the right time.”
Challenges in realization
Before the EHDS will bear fruit, however, some steps still need to be taken. The biggest challenges lie with vendors; they need to start making their systems open. “In addition to making them open, I also think the systems need to be much more in line with the processes of healthcare providers. The content of an EHR has always been conceived for doctors, rarely by (mandated) doctors. That has to change and that's also where I see my role within IHE Netherlands,” says Meeuwis.
“Look, an EHR plays an excellent role in the backbone of the hospital: in scheduling appointments, beds and ORs, in the claims process. But what these systems are not designed for and are not good at is supporting care. The name is confusing, because an EHR is not actually a patient record; it's a hospital system. Actually, you should have separate applications for care pathways; smaller software packages that are completely tailored to a care pathway and that you can easily link to a PBM. The PBM then takes over the role of the EHR: it is the central place where all patient data comes together. Underwater, the PBM simply funnels the user to the smaller applications used in the care process itself.”
She believes that hospital ICT departments should play a much more directing role in this. These should no longer think in terms of hospital-wide EHRs, but they should look at each specialty: what exactly do the doctors and nurses who provide this care need to do their work well? How can software support and facilitate their process?
For that matter, healthcare providers themselves also play a big role in this, says Meeuwis. “Healthcare providers will have to take the lead and indicate what a user-friendly healthcare information system should look like. What information does the care provider need and what information should be shared between care providers and between care providers and the patient? They must outline what providers must meet by 2030 under the European regulation. However, more than half of all healthcare providers now have no idea what the EHDS is. That really needs to change. Because the EHDS is going to help healthcare providers tremendously, but that requires their input.”
Creating clout
It is for this reason that Meeuwis is so active in a variety of side positions. She explains, “For example, as IHE Netherlands we can point much more to the agreement system that is already in place to make data availability for each other; to the profiles that already exist and to the methodology that suppliers can use to build these profiles into their software. In addition, IHE can facilitate bringing parties together. That is important to create clout.”
Clout also creates CPME, the European doctors' organization. Meeuwis: “We have created a document that states the requirements that EHRs and other healthcare information systems will soon have to meet. It's not just about the systems, but also about the processes surrounding selection, implementation and management. That document not only states what we healthcare providers want, but also the obligations that this will soon entail for us. As I just mentioned, physician input is desperately needed. Among other things, we as CPME believe that physicians should have a monitoring role in assessing whether health information systems comply with the EHDS. We want healthcare information systems to be designed in a user-friendly way: the systems should support healthcare professionals in their tasks and reduce their administrative work. Those who can best assess whether this has been achieved are the healthcare professionals themselves, the users of these systems. They can indicate whether it is user-friendly enough and whether there is interoperability and data availability.”
Advice
Finally, she has some advice for the cabinet and the Minister of Health, Welfare and Sport, who, after all, can play quite a guiding role. “I think it would be good if the minister made the use of the international standards and exchange profiles mandatory. So far in the Netherlands we have had far too much of a tendency to do things just a little differently. So much time and money goes into that that I sometimes think: isn't it more efficient to stop the old and start again, according to the frameworks of the EHDS?”
She also thinks the ministry could inspire health care providers more to get involved in the implementation of the EHDS. And last but not least, she thinks that even more momentum should be given to a good national data infrastructure, in line with the objectives of CumuluZ. “We should no longer look for solutions at the regional level, but see the Netherlands as one region.”
Fortunately, quite a few good things are already happening in these areas. “But things are moving too slowly,” Meeuwis believes. “We need to accelerate, because we have no time to lose.”
