Apart from being a partner in xShare project I am also, like most of us, a patient. It is amazing to see how many of us have very personal reasons to contribute tirelessly to standards for better sharing of personal health data. I have told my personal story before, so this time I want to focus on some simple experiences in daily encounters with health professionals that strike me, when you are, like me, focused on the exchange of health data.
After having been treated for prostate cancer early in 2021, it turned out that not all tumors were gone, so further treatment was necessary. Therefore, a year later in early 2022, I was going for a second opinion to a specialised cancer centre in Amsterdam. Of course, my cancer care team at home in Twente had provided all my relevant medical background material to the specialised cancer centre. Nonetheless, part of the intake on the day of my second opinion was to record my current medication. I had filled out my medication list in advance already, using the patient portal as requested, but the person doing the intake couldn’t find the electronic form. I then suggested she retrieve my medication list from the national health data infrastructure, for which I had provided consent. She then mentioned that her UZI-card, the identification and authentication to access personal health data through the national infrastructure, was broken. So, at last, I took out my phone, called up my medication list on the app of my local pharmacy at home and handed her my phone. She then rekeyed the information displayed into the system.
I was reminded of this encounter when I recently visited my dentist, who asked for my medication. He then referred me to a dental hygienist, who asked the same question. All within one month. Why is it so hard to share pertinent medication data with all involved? Is it because we’re so used to do it the old-fashioned way? Why trouble yourself with something new? Is it because there are very few patients that actually bother to have their medication list available in a standardized electronic format? Do we actually have a standardised electronic format? And, if we do, will the system of the dentist and the dental hygienist also be able to accept that format? Will I actually be able to respond to their question with a click on my xShare Yellow Button on my phone to share my current medication?
I personally very much hope so! That is why the xShare Yellow Button is so important for patients. And why the upcoming regulation on the European Health Data Space and the European Electronic Health Record exchange Format fills me with hope. I already access my health data online on a regular basis and very much want to be able to share this data with others at the click of a button!
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Written by Dr Robert A. Stegwee, Strategic Consultant for Health IT, CEN/TC 251.
Contact the author at robert@trace-health.nl.
