The digital exchange of data in healthcare in the Netherlands is in a sorry state. A new law is set to change that from 1 July, but PhD candidate Marcello Aspria is sceptical. Aspria shadowed the development of the failed Rijnmond Healthcare Portal and saw first-hand how difficult it is to organise the digital exchange of (patient) information.
Sending a patient's medical records to a fellow doctor by fax sounds like a flashback to the 1990s, but nothing could be further from the truth. "I don't think there is any other sector besides healthcare where the fax is still widely used", says researcher Marcello Aspria of the Erasmus School of Health Policy and Management (ESHPM). "Sending off CD-ROMs with results by courier is likewise still commonplace. While some specialists will have an iPad to hand at patient consultations, others arrive with a stack of A4 printouts."
In short, digitalisation and electronic data exchange are lagging behind considerably in the healthcare sector. It has been the subject of discussion for more than 25 years and there have now been numerous (regional) initiatives. Whereas doctors initially did not see the added value, they are now advocates of improved digital data sharing. However, Aspria knows first-hand that organising this would be a very complicated process. As a PhD student, he was involved in setting up the Rijnmond Healthcare Portal (Zorgportaal Rijnmond), a partnership between hospitals in the Rotterdam region, which aimed to facilitate the exchange of data, such as patient records.
Rijnmond Healthcare Portal fails
Construction of the platform began in 2009 and culminated in the celebratory launch of the platform in 2011. Yet the portal never became a success and gradually faded into oblivion. "I thought that was unfortunate. These kinds of projects can go one of two ways: either it turns into something really great or it’s a flop and you never hear about it again. It turned out to be the latter. In my naivety, I honestly thought we would be taking a thorough approach and that we would be successful. The idea was also to draw valuable lessons from the project. But how do you do that with a project that hasn't actually got off the ground?"
Those lessons do nevertheless exist. In future, for instance, patients should be involved to a greater extent as well as earlier in the development of various applications. It was also thought that if there was a good platform, it would attract users automatically. However, things are often more difficult in practice: "My thesis is about the efforts needed to achieve effective digital data exchange. That’s where technical factors, political interests, human factors and clear agreements on the use of systems come into play."
Wegiz Act as of 1 July
The PhD candidate is therefore somewhat sceptical about the Electronic data exchange in healthcare Act (Wet elektronische gegevensuitwisseling in de zorg, Wegiz), which comes into force on 1 July. "It’s great that the government is willing to take charge and it is an important signal, but the Wegiz won’t change the world immediately. There is a huge amount of electronic traffic. It’s just so fragmented, which hinders an effective exchange. Agreements will have to be made about the regulations and standards to be used. The law only provides frameworks to do that; my thesis shows that all kinds of other forms of work also need to be done."
Sockets and ghost stations
In 2010, Aspria spent six months at an Erasmus MC department responsible for digital data exchange, among other things. Staff were also responsible for making the data usable for the Rijnmond Healthcare Portal. "The portal was initially described by the project's programme manager as a 'socket' that you’d be able to plug things into, hence the term 'Plug-in Healthcare' in the title of my thesis. Something the developers told me is that connecting something sounds very simple, but that it doesn’t work that way at all."
For example, it proved very difficult for the system to handle both eight- and nine-digit Citizen Service Numbers (BSN). A plug-in, a piece of code, then had to be built for that purpose. There were also organisational, political, legal, and financial challenges. The PhD candidate has observed that many innovation studies focus on the construction phase. However, it was the very aftermath of the project that provided him with interesting insights. Things can become unmanageable when loose ends pile up. "The infrastructure then falls into disuse or is used for completely different purposes. It is reminiscent of ghost stations. In Paris, several metro stations were never completed and there’s even a metro station without an entrance. I see that as a valuable metaphor for the project I researched."
The Rijnmond Healthcare Portal therefore still exists mainly as a ghost station. Many references to the platform can still be found online, but the domain name is now owned by another party. With his thesis, Aspria has brought the portal back from oblivion: "People haven’t spoken about it for years – and for some people involved, it may even tear at old wounds. For others, it may actually trigger positive memories. I now use the portal to tell a story about infrastructures and recovery work."
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On Friday 23 June 2023, Marcello Aspria will be defending his PhD thesis 'Plug-in Healthcare. 'Development, ruination, and repair in health information exchange'.
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