When cooperation within the healthcare domain is hampered, the quality of care suffers. To improve cooperation between healthcare disciplines and organisations , the importance of (healthcare) data is increasingly emphasised: data exchange and data availability.
When different care branches can draw from the same data, they work with a full picture of the patient. This benefits care. It also opens up opportunities to do research with more complete data sets. In practice, you see that the terms data exchange and data availability are often used interchangeably - however, they imply different things. Time to clarify.
In our blog series "The Future of Data Availability in Healthcare," we will discuss the importance of data availability, the possibilities of open platforms, the challenges of that solution and CODE24's vision on this topic. In this article, we start with the basics: what is the essential difference between data exchange and data availability?
The discourse also often uses the term 'data exchange', in the context of the Wegiz for example (which literally stands for "Electronic Data Exchange in Healthcare Act"). In the Wegiz, this term is interpreted as both sharing and accessing data. Tim Postema (manager of Advice & Innovation at Nictiz and lecturer in clinical information science at Amsterdam UMC) reasoned in ICT&Health that the Wegiz too should actually be about data availability: "for whoever needs it for whatever purpose (with the necessary legal, privacy and information security safeguards)."
The essential difference between the two terms seems to be in the practical implementation - in both cases the data can be accessed, but with data availability you work from a data "source" that is open, and with data exchange you send data back and forth, making multiple copies of the same data.
In the words of Erik Vermeulen of EY, quoted by Dutch Health Hub, "Sharing data means duplicating and moving data back and forth." That's why, he says, the focus should be on sharing rather than exchanging data.
When you duplicate data you actually lose your grip on that data. In the original source, you can no longer see who has read or modified the data, whether it has been distributed further and what the most current version is. The chaos this creates is incredibly difficult to control through requirements or guidelines for data exchange - which is why there is an increasing emphasis on data availability.
When you work from the source of data you maintain control and insight into who is accessing and modifying the data. There are not multiple versions of the same data, so what is in the source system is always current.
In addition, you could talk about data usability - availability only makes sense if the data is also available in a usable format. That is where standardization comes around the corner again: by working with open standards such as openEHR, data is provided in a standardized format that makes it easy to use for various purposes and by various systems.
On the other hand, FHIR, for example, is widely used as a standard for data exchange: FHIR can also restructure data during the exchange process, so that it becomes usable for the destination.
standardisation of source data, as with openEHR, also helps in the multiple uses making the data - ultimately, a lot of data serves more than one purpose and you want to create as few needless copies as possible. For this, of course, the standards must then be set up - which is why good cooperation between healthcare and IT specialists is so incredibly important.
IT consultant Remko Nienhuis of Melius Health Informatics also emphasizes that data availability enables healthcare providers to use data outside of established use cases to appropriate care provide appropriate care: "even an ignoramus can come up with more care paths than Nictiz can standardize. And every healthcare provider knows that patients rarely adhere to a standardized care path. Data availability responds to this reality; the healthcare provider determines what data is needed for the care of a specific patient, using all the data available in the healthcare network to do so as far as professional and legal frameworks allow."
In the discussions surrounding both data availability and data sharing in healthcare, privacy also often remains a thorny issue. Patients must consent be able to give or withdraw permission for their personal data to be shared or made available. The debate about whether this should be "opt-in" or "opt-out" has been going on for some time - what weighs more heavily in principle, that the patient decides on his own data or that the healthcare provider has all the data needed to provide good care? Under the current setup, a patient would have to give consent for every single use, which of course is not likely to be fully done in practice.
Andries Hamster, chief product officer at Founda, does see opportunities to make this less complex by means of data availability: "When there is data availability, the only question you have to ask the patient is: may I share the data with another healthcare provider who requests the data on your behalf. Then you can redesign the consent issue so that that becomes manageable."(Skipr)
And as mentioned, when data is not duplicated for the purpose of data sharing, it is easier to maintain control over who is allowed to access the data and has actually accessed it.
The existing healthcare systems are grafted on data exchange and not primarily on data availability. It will take time for healthcare systems to operate on data availability. Therefore, both data availability and data exchange will certainly keep their place in healthcare information architecture for the foreseeable future. Still, there is growing awareness that data availability is the future. The advantages of working from the data source are clear.
When data availability is properly managed, with the right levels of usability and privacy, the registration burden on the caregiver can be reduced, allowing more time for actually providing care, within one's own organisation and within care networks.
The whole thing may raise questions: should we really be working from a single source? And if so, how? What does this mean for the architecture of EHR's and healthcare systems? What does this mean for vendor lock-in, for example? In the next blogs in this series, we will discuss this in more detail. Want to make sure you don't miss these blogs? Then follow us on LinkedIn or sign up for our mailing list below.