Access denied or limited: is there any chance to advance data exchange in healthcare?

Posted on: 17.04.2019
Man with his phone and data

When digitalisation fails or does not bring the expected results, the lack of interoperability is the first to be blamed. It leads to inefficiency, wasted time and money, clinician burnout and medical mistakes. Finally, it makes the promise of connected health illusory. Can we do more to improve the ability to exchange data, other than setting standards and waiting for results?

“Many government strategies over the years have included a commitment to interoperability, or even mandated it as a condition of procurement, yet successive policy documents continue to present this as an aspiration rather than a reality. One of the key challenges is aligning strategy with enforcement, particularly when new and exciting tools come along,” says Professor Claudia Pagliari, Director of Global eHealth at the University of Edinburgh, during our long interview on political, economic and ethical governance for digital health.

Fighting against incoherent data

The digital healthcare landscape is changing rapidly. A few years ago, when “digitalisation in healthcare” was equal to the implementation of IT solution in hospitals, “interoperability” was mostly discussed in terms of Electronic Medical Records. Today’s healthcare has become more complex: thousands of mobile apps collect patients’ data, artificial intelligence needs a common IT language to analyse information, and clinicians are no longer bound to one facility and instead switch between different IT systems. “The ability of different IT systems and software applications to communicate, exchange data, and use the information that has been exchanged,” as HIMSS describes the nature of technical interoperability, is improving every year but still pressure must be applied to change this issue of incoherent data.

The lack of interoperable systems leads to paradoxes when fully digitalised hospitals have to send laboratory results or EHRs by fax, post or CD. To check all the data about patients, doctors have to switch between different systems, spending their times on clicking instead of taking care of the patient. Imagine the US healthcare market with 700 different EHR systems made by 700 vendors. Similarly let’s imagine a world where each bank set its own data exchange standard so you could only withdraw money from a specified ATM. We are all tired of the data chaos.

It will take years to replace or update all the incompatible systems and, in some cases, it is the only way to improve. Meanwhile governments should make sure that new tools, like mobile health apps, meet the technical interoperability requirements. However, technical, financial, administrative and legislative barriers are only the tip of the iceberg. Social interoperability is a challenge we have to tackle by taking a strategic approach. We can’t let this problem remain unsolved by thinking “we can’t change people, we can’t change the culture of sharing data”. Because we can: by setting bottom-up initiatives, alliances, regional networks, changing the approach to the patient as the owner of the data, making science data open for re-use. Already GDPR is creating its own momentum in regard to data sharing and portability, transforming the attitude to data privacy in the long-term. Connecting people is the best way to open the data silos. Although standards help, people have to lead the process of making healthcare data interoperable.

The interoperable solutions from the free market

While some governments are struggling with healthcare data interoperability, the free market finds its own solutions to deliver what patients are expecting. Last year Apple introduced a new feature for its iOS system – patients can download their EHR directly onto their mobile phones. “Patients can aggregate their health records from multiple institutions alongside their patient-generated data, creating a more holistic view of their health,” announce Apple. The connection between the patient’s EHR and Apple’s Health app utilises the FHIR (Fast Healthcare Interoperability Resources) standard. The solution supports most important data like allergies, conditions, immunisations, lab results, medications, procedures, and vital statistics.

Standards like FHIR, open APIs, blockchain and cloud computing – mean that things are getting better in terms of technical interoperability, but we still have to pay for old sins and fix the consequence of the wild digitalization of healthcare in those times when the fascination with new technologies prevailed over strategies and standards. Along with the technological revolution we are getting wiser and changing slowly the culture of sharing and exchanging data. Healthcare organisations, academia, care providers, insurers and governments are cooperating. This social transformation will boost technical interoperability and the transition from data chaos to data order.  

From the author: By the way, the HIMSS and Heath 2.0 European Conference in Helsinki (June 11-13) is another opportunity to break down the walls in digital healthcare. 

Artur Olesch

Artur Olesch

Freelance Digital Health Journalist

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