Information is the oil of the 21st century is what I’ve heard and read about numerous times…but not once in a context that I’d like. Every single time I’ve stumbled upon an article with these keywords, the whole point was personal data that marketing companies sell (or other companies sell to marketing companies). Personal data such as emails, your food, drink, shopping preferences, your friends, your job information (…), all with a point of targeting advertisements. Thousands of companies would pay gazzilion of dollars for these information about users’ data on the internet.
Why is no one fighting to make clinical data exchangeable for the purpose of making the world a better place? For the purpose of helping patients? For the purpose of well-being? People die. People die because their clinical records are not exchanged between different hospitals, different countries, different systems. But all other types of personal data that I couldn’t care less (or I’d actually prefer if it wasn’t), is shared instantly to third parties. All problems arising when you talk about clinical interoperability are instantly gone when you talk about personal data that can be manipulated and used to make money. But when it goes for data that should be shared for improving the lives of people, for making sick people not dead,…. ?
If the product is free, you are the product
Money
At the end, it all boils down to money. Personal data can be sold and companies that do so get paid a lot. Medical data that holds clinical value obviously can’t be sold like that (rightly so, I hope) and the main incentive in the world that we live in, is gone! Even more, making a non-interoperable system interoperable REQUIRES money. So instead of getting money, you have to pay it! Oh my god, this is all wrong!
It truly is. But then again, things are changing. Decision-makers are starting to realize the importance of clinical software to be interoperable and when doing so, they’re changing conditions on the market. Software companies working in the healthcare industry that support standardization out-of-the-box are much more attractive on the market than those that don’t. A nice analogy was mentioned at the Interop’19 conference by Mike Jones – VW going electric. This is way out of their comfort zone and out of their business model. A business model that works. But because of the shift that is happening globally, they’re forced to go that way, or they might lose market share to competitors that are also going or are mainly eco-friendly.
The same is starting to happen in the healthcare industry. Governments and government organizations are pushing usage of standards and are making some vendors more attractive than others, forcing them to accept what should be a reality a long time ago. At the end, it doesn’t really matter – incentives that are eventually going to bring us to fully interoperable clinical systems shouldn’t matter, as long as the end result is the same. But I can’t help myself but to put a mirror to today’s society – why is it perfectly fine and immediately possible to share useless data for money, but when it goes for sharing data that would actually be beneficial to be shared, governments needed to twist some arms and change market conditions for vendors to go the right way. Not only that, vendors in some free countries of the world consciously designed non-interoperable systems to vendor lock-in their clients and prevent them from buying any other software from competitors… even if that meant that this data won’t be able to be shared and will go against patient’s wellbeing! … $$$$
Interoperability VS funding
A great analogy was presented at the Interoperability symposium in Cardiff on the 14th of March. Interoperability VS funding. Making legacy systems that weren’t designed to be interoperable, interoperable, requires a substantial amount of money. Money that needs to come from somewhere, from some organization or some company. But when you think about it, who should actually fund it?
Interoperability is a horizontal phenomenon, stretching between different systems of different organizations and different companies. It’s about data shared between them. And when you think about that, you realize that funding is quite the opposite – it’s vertical. Funding comes from a single organization that owns some system. Who should then sponsor the link between different systems? Which of the vertical entities should provide their money for the horizontal phenomenon – for the link in-between?
To me, that’s an interesting perception and while I don’t have enough understanding of the actual business perspective of this problem, I have some ideas that come to mind. And it’s using widely accepted, community driven standards (HL7, IHE) to create open platforms in open ecosystems. That way, the funding is done once by a vertical entity for their solution and then they can take the horizontal link for granted for several different systems to come.
Open platforms, open ecosystem
As briefly mentioned, Parsek has attended the Interop’19 in Cardiff and there were a lot of talks about open platforms in open ecosystems and what we’d need to make this happen.
The idea of this “open ecosystem” is that all applications and solutions that exist and form an ecosystem need to be designed in a way to be able to exchange and use clinical related data.
The general consensus is that information is the most valuable asset and that data produced by different clinical applications isn’t efficiently used. That’s why the ability to exchange data is a must, especially in the healthcare industry where it goes for patient’s wellbeing.
Let’s not accept the world as it is. Let’s be unreasonable and go against it – for a change, let’s do something that’s beneficial for end users and let’s do it with the right incentives in mind.
Gašper Andrejc, Health IT Domain Lead
Views are my own and do not necessarily reflect the official policy or position of any other agency, organization, employer or company.