Are we ready to have our data available digitally?

Let me ask you a very simple question but a so complex answer....

Are we ready to have our data available digitally?

On LinkedIn I already asked the question whether we wanted to pay to have our data available and the vast majority replied that we thought this should be FREE.

In the meantime, I did some research in Belgium to see how the digital revolution was progressing and I came across the Digi.leap in education and was shocked. What I found has a certain repercussion also on our healthcare case according to me.

Education and digitalisation, Still a long way to go.

As in healthcare, it is a program emanating from the government and all high schools were forced to participate. Just like the hospitals rules regarding EPDs and network inclusion were imposed.

Because I am active in parent councils and still have school-aged children, I also have first-hand experience in the school situation, and let me tell you, it does not look rosy.

The first thing I noticed was that the choice of device and the way it was handled was very limited and no or little choice was left to parents and students. For example, a student in the 5th or 6th year of secondary school was also forced to take a 4-year lease in some schools and in return received a device that would clearly not be satisfactory when moving on to higher studies...

But that's the worst part of the story, what I did also notice is that my sons lugged a computer and an overloaded bookbag with books to school EVERY day AND that the computer only needed to be charged once a week maximum.

At the parent council I questioned why AND books AND computer because that led to overweight bags. It turned out that most courses were not available in digital form! Seriously? They’re telling me a digital revolution had started, millions were spent and the infrastructure is not available??

Surely that could not be!

However the truth is a bit more nuanced, but not also for the correct reason according to me again, because the books do exist digitally but can only be made available to students with special needs, for the rest there is no arrangement and no one is working on the arrangement!!

Could it get any crazier?! Wait for it... The laptops MUST be charged at home, since the schools do not have the necessary infrastructure to charge so many laptops [and we are talking about electric cars...] what did I tell you about not being prepared?!

Let’s not talk about the teachers who also reluctant and use the paper books because that is what they are familiar with…

Healthcare is going digital you say?

Now looking at healthcare, how far are we from this scenario there? Every hospital over the years has adopted its own EHR. For doing this, the staff members have been trained, they have spent considerable time with that software and the users have mastered how it works.

But, when we then see that several studies worldwide indicate that those same users have limited faith in the accuracy of the data, then there is a problem. A problem that will only get worse when we’ll need to share the data or, even worse, merge them into one new system.

And here, I see the analogy with digi.leap because if we are not even sure yet that the data is reliable and accurate how could we think of merging the data?

That sounds very much like the software problem of schools, namely and you know my expression now: “garbage in, garbage out”. Unfortunately for the patient whose data is not there when it is needed!

Of course, it is easy to point out a flaw in the logic, it is another point to also offer solutions.

How do we do that?

Well, first let’s make the data reliable and accurate. So we don't increase the data mass but find out what is wrong and what is right. Either the entire staff goes looking for that, which is not in the right fields, not very realistic I would think and also very time consuming OR we let technology do most of the work, with human oversight.

Tools like NLP and ML can easily allow us to look for information that has been entered incorrectly or in the wrong place. Just as easily, data records can be compared to determine whether it is the same patient or not. In this way, one can easily improve the quality of the data BEFORE the mass becomes unmanageable.

Once the data is "healthy", one can think about making agreements on how to share it. Again, let’s prefer to build in an intermediate step before switching EPDs. A slower migration with guided structure shift could easily be done with a Unified Care Record, where data can be made available to all EHR users within a defined group of healthcare staff, across hospital (and EHR) boundaries.

While using a UCR, you can exchange data that way, either in a separate (even read_only) window or truly integrated, between 2 hospitals and or more members of a network. But it should not end there because also ALL first-line staff, general practitioners, home nursing and so on, could easily be provided with the correct and complete information.

These steps really do need to be taken before investing again in new EHRs and merging data.

Economically, medically and humanly this makes much more sense! It becomes even more efficient if we can fully integrate the patient and his/her environment. And finally, from there you can easily provide consent and accessibility for pharma and life sciences.

Federated authority where function and consent are clearly defined is an important element from Universal Health Data Access where we focus on getting the data to where the patient needs it.

To get work done on data we need all tools to anonymize, encrypt, authenticate and protect to be transparent and easy to use.

To make a long story short, either we spend a lot of money with possibly few results or we spend much less, rationalize and clean up and achieve a rational and thorough result.

Want to be part of the solution?

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Hope to hear from you, Jan Vekemans