Can you find details of the most important medical issues in your patient record(s)?

Why am I not surprised about the results of our poll?

Recently we took a ? poll on LinkedIn and your replies were shocking and at the same time confirming what we feared. ????

A simple question: name the 4 major medical incidents in your life and find the data about it.

The question was inspired by a discussion with second opinion specialists and their insistence that every week they are faced with patients, with severe diseases such as cancer that have no or limited information about what happened to them I heard recent or more ancient times… ??

Data is collected, a fact! And Belgium has proven to be extremely good at that BUT finding that data afterward can prove just as difficult as remembering when certain facts happened in your life. For example, I can recall the date of my kidney removal operation, January, 13th 2020, but when I’m asked when I had any of the other surgeries, I can give you a decade but not the right year or month, greatly complicating the search for the right data.

This is why silo’s, even assisted by centralisation, without transparent indexing, leaves us wanting.

Add to this IT-illiteracy of our patients, sometimes even of our professionals, due to age, … whatever the reason and we have a problem.

But not just me not remembering is an issue, what about this…

I fill out a lengthy form when I need to be operated. This is a questionnaire send to me by an anaesthetist before my operation. This list is empty, even though the hospital will have a lot of the information already in the EMR system. So, I, as a patient, now need to do mental math and find back all the answers to difficult questions even struggling through some of the specific medical language. Why is the form not pre-filled with the available info? This would allow me to check and also allow me not to have to pain my brain in finding available details that I have no recollection of before reading it then and there again (you know, along the lines that when one reads about the time you broke your leg and by reading it your memories come flowing back). It would serve both parties to do so, but NO, you get a lengthy EMPTY list! ??

The point I’m trying to make is that we all make our lives more complex, at a moment in life that we need quality of service and compassion, rather than cold calculated fact finding.

If we also take into consideration what GDPR and privacy legislation says about data of the patient… I challenge you to see ALL the data that exists about you, even though privacy laws tell us that, we, as the patient, have a right and data gathering instances have an obligation to tell what they have available on us. It is impossible to (just) see all what is available as it is so scattered.

Hence my call to arms for ALL of you, whether a patient, a healthcare worker or an IT professional/vendor, let us make the access to data easy, available and make it happen now!

I know that the hashtag is #1patient1record4Belgium, but we could easily reproduce that to the rest of the world. Indeed, I received feedbacks, from Germany, from the UK, from Australia and so on saying that they were facing the same issue. This is not only a question related to Belgium and we hope that with this community we’ll be able to give some examples on how to change things for the best for the patient.

This is why I’d like to ask you to participate in this movement. We have already had a number of people who testified. For example, we launched our first series of events called “Healthy Data Tales” and which brings together all the actors from the Health care ecosystems or people who have interest in this matter.

We had the first edition with Melchior Wathelet, CEO of Zorgi, a technology provider, who gave his points of view on 3 key points according to him:

• Awareness
• Financing
• Regulations.

You can watch it again by clicking here ????

We’re going to have the second edition with Mrs Alphonsine van Thielen, a patient who will explain the difficulties she had to have a diagnosis and how difficult even doctors have it to find the relevant data.

And they’re many more to come in the following weeks. ????

However, we want to hear your voice too!

We want to hear from you what needs to be changed! And that means your participation is the one I want. Together let’s try to improve health care in Belgium, let’s make the data of your health, HEALTHY DATA!

Thank you.