We discussed in a previous article the opportunities that open platforms offer to improve data availability in healthcare realize. Although the benefits of the open platform concept are tangible, there are still a number of hurdles to overcome. In this article, we highlight some of these challenges to give an idea of where we are now and what discussions need to be had.
The Netherlands is somewhat known for regularly reinventing the wheel - we like to do things our own way. The same goes for inventing the architecture for the open platforms for healthcare data to be realized in the Netherlands. For example, we are busy building healthcare information building blocks (zibs) for the connection between data registration and exchange, while this role could perhaps also be fulfilled by international standards such as the archetypes from openEHR or parts of Semantic web (see the article "Is there still a future for zibs?" by information architect Gerda Meijboom of Nictiz). This requires a critical look at what we need and what is already possible.
In addition, suppliers (like us) now mostly chart their own course toward the destination outlined by the industry. There is not yet no clear direction determined from above (from the government or bodies such as Nictiz, which are actively working on this), so in order to make progress, everyone chooses their own path based on the available information. Cooperation is essential here, so that we can continue to learn together and benefit from each other's expertise - this is happening, but perhaps not as much as we would ideally like.
Internationally there is also an enormous amount of movement from which we can learn from the Netherlands: think of the deployment of the National Digital Platform by the NHS in Scotland, the steps that the NHS in England is taking towards a federated data platform, the launch of the Clinical Data Repository in Catalonia and the fact that the larger players in the EHR market in Norway, Sweden and Finland unanimously chose to modernize their solutions on the basis of openEHR (at the time of writing it seems that Denmark will also join them).
When healthcare organisations can all draw from the same federated open platforms, it has several advantages in terms of treating patients, research, et cetera. It strengthens collaboration in the chain - in theory. Of course, this can have several reasons - sometimes the dataset is not fully usable (for example, because specific variables are missing), or perhaps there is some lack of confidence in the work already done by colleagues at other healthcare organizations.... A critical eye is obviously good and necessary, but we may be running over our goal this way.
Wanting to perform certain procedures oneself also has another cause: the financial interests of the healthcare organisation. When the procedure is performed within its own organisation , it makes money. You can't really blame the organisations - they find themselves with the market forces in healthcare in something of a split. Suppliers of healthcare systems demand quite a bit of money (and because of vendor lock-in, they are often stuck with snappy contracts that are getting more and more expensive) and on the other hand, there is pressure from the government and insurers to reduce costs.
The idyllic image of cooperation for higher efficiency and better quality thus clashes in some respects with other interests. Here, among other things, there is a role for government, which can encourage such cooperation through policy.
As mentioned in our article on data availability and data sharing, where (medical) personal data is concerned, the privacy aspect is also always up for discussion. At the policy level, several discussions in this area are currently ongoing, including:
Who is the "owner" of the data stored in open platforms? What are the consequences of such ownership in this context?
Can data sharing consent be captured in a manageable way, or will it always legally require multiple "checkmarks" from the patient?
Should the sharing of personal data be "opt-in" or "opt-out"? Which interest carries the most weight?
How can we best inform people about the need and value of sharing their health data and how it will be secured?
This is where decisions will have to be made to make open platforms a real success.
In addition, more issues come into play in terms of ownership: when working with federated open data platforms, one must also think about governance: who decides for the federation what the architecture looks like and is developed further?
Open platforms have the potential to also across regional and national borders cooperation. This does cause us to ask ourselves the question of how we should ideally approach this: what remains regional, what is regulated at the national level and where do you seek international cooperation? What is desirable, what is possible (technically and practically, but also legally)? Fortunately, there is already movement: initiatives such as the EHDS (the European Health Data Space) are paving the way for closer international cooperation.
On a technical level, that means working with internationally embraced standards like openEHR to facilitate basic collaboration, but ensuring that those standards also have enough flexibility to accommodate local needs - a point also made by physician and healthcare informaticist Heather Leslie at the November 2023 openEHR conference.
Within the Netherlands, there are already several regional initiatives, but it was discussed at the Health-RI conference in 2022, among others, that these will not quickly 'organically' grow into national structures. For example, Jochem Mierau of Lifelines Institute emphasized the need to coordinate at the national level.
For open platforms to land well, it is important to get as many vendors as possible on board with the new way of working. This requires adapting part of their business model. Of course, embracing open data platforms also means giving up some control over the data - but it also has several (commercial) advantages:
As a supplier, you cannot be the best at everything. When all parties work on the basis of open standards and build their solutions on open platforms, suppliers can work together on the basis of their specialties. That makes a big difference in the development pipeline and related costs.
The use of open standards is the key to true scalability. When you can work with "building blocks," you can (as with Lego) easily create infinite combinations.
More innovation is possible because even smaller, innovative start-ups and POCs can land faster and easier because they can connect to the open platforms.
Ultimately, most of these challenges revolve around policy and setting a course. Technically, almost anything can be realized (we know all about that at CODE24) - but to ensure that open platform technology actually solves what it is being developed for, policy at the national level must support the data availability vision. In addition, it is important to keep the focus at all times on collaboration: between vendors, between healthcare organizations, between healthcare and IT, and with policy makers. Achieving optimal data availability in healthcare is such a massive project that it is truly something that all parties must do and embrace together.
In any case, from CODE24, we are following developments closely - staying on our intended course while remaining agile where necessary. Ultimately, beyond all the technical, legal and practical considerations and bears on the road, it's all about the end goal: making healthcare better.
This article is part of the blog series "The Future of Data Availability in Healthcare," in which we discuss the possibilities of open platforms for data availability, the challenges of that solution direction, and CODE24's vision on this topic.
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