Is anybody thinking about cross-border patient data?

This post was written for, and published by, HIMSS Europe on the 15 February 2016, in the run up to eHealth Week 2016 in Amsterdam. It was also published, in abbreviated form, in Dutch, on ICT 

Through choice or circumstance, millions of Europeans live in another EU state. A further 180 million or so do so on temporary visits according to Eurostat. And like me, some of these citizens live with a chronic medical condition and find themselves immersed within the realities of more than one health care system at some point in their lives.

The child of two different EU nationals, and later living in third Member state, it hasn’t always been easy to keep a consistent and reliable information state for my health. To date I have been the guest – across borders – of 15 different hospitals and visited tens of general practitioners and depended on an even great number of specialists.

There is impressive work to implement reliable and interoperable systems within respective European countries, but I have yet to see evidence for much hope when it comes to information flows, when you cross from one to another country.

And yet, we have a policy context across the European Union where citizens are mobile and furthermore enjoy various rights to cross-border healthcare, so is it not important that the we start to think about how the data can match this?

Nothing has changed over the past 20 years.

As things stand it is as if the innovation of information technology simply never existed, with clinicians sending ad-hoc patient information, usually in paper form, between one another. And this assuming that they are minded to cooperate, linguistically interchangeable and have the time to spare.

Retroactively requesting records, can also prove challenging. Handed over after weeks or months, and if my torturous experience has anything to go by, in an often incomplete state, it’s not a tenable approach.

The only certain continuity – present at all those different appointments, assessments or overnight stays is the patient. With little other option the patient ends up giving a verbal (and layman’s) history to the doctor of the moment. However, with the tools currently available it is impossible to be comprehensive once you get beyond a tonsillectomy, assumes a compos mentis patient and demands a forgiving consultant.

It’s time to build the foundations, for now and for the future.

I am excited to be attending the eHealth Week 2016 (link it to the website) in June. With the main slogan, “You, at the heart of transition”, it gives me great hope that the spotlight turns to the patient’s perspective, currently almost untouched territory, ripe for thought and innovation.

Just perhaps the notion of a “data hub” residing within the profession, or perhaps just who has access to the keys, needs to be turned on its head, to build reality where the patient is empowered to hand over an accurate picture of their health. Not least to be best placed to address the issues of the future where there will be shift akin to the transformation “always-on” internet following the punctual “dial-up”. No longer an appointment or a test, but 24 hours per day of data creation with mHealth and remote monitoring etc.

Many of the challenges at a national level including around “patient portals” aren’t be mutually exclusive but I hope the groundwork can be built with a thought to interoperability at the pan-european level to match the movement and clinical access policies many citizens already take advantage of.

(Very approximate figures, to give an idea of population flows were based on: Eurostat: EU citizenship – statistics on cross-border activities

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