How to give patients better access to their data, and who should do this

Let us try to go in depth into all the elements involved to give patients better access to their data. As I want to go into details, I’ll cut the newsletter in 2 editions. This one will be focus on the components such as EPD, Clean Data & Trust and on the “WHO”, meaning who are the key actors to achieve this?

The Patient is the data

The big discussion is not just about the content, but also who owns it. This is an interesting point as the patient LITERALLY IS the data! In the case of your bank records nobody argues that the data/money is yours, but in the case of patient data there is a big discussion as to who owns the data.

Despite all the legislation, despite all the talk there isn’t any clarity on who owns the data and that makes for a fully unclear situation. When the ownership of data is unclear, maintaining it becomes fragmented and that’s exactly the opposite of what we need.

Perhaps this is where we should start the discussion... what is data that saves lives? What is available as data? WHY? How come not all data is available everywhere? This brings us to the current situation.

Every hospital has an EPD that contains data of every patient that visited the hospital.

The bigger idea was to then gather part of the data in the 4 “HUBs’ (such as Abrumet…) to make data accessible across hospitals. The SumEHR records were supposed to make a bridge between the GP and the hospital as well. Theoretically this would have made for a rather waterproof system BUT unfortunately, it isn’t as good as it need to be.

Take the example of one of my friends who lives in Brussels and works in Vilvoorde. When he needed medical attention at work, he was transported to the closest hospital, and they didn’t have access to his Abrumet kept, “silo'd” data!

Plenty examples exist of data being kept in inaccessible places. Data that can mean the difference between life and death. Just as recent as 2 weeks ago a Belgian Minister Jo Brouns was very pleased to state that he wanted to add even more SILO technology.

WHY? Wouldn’t it be more productive, more straightforward to SHARE the data directly from the source? It can be done! Important parts of this road have been travelled by the Dutch, @Landelijk Schakelpunt and MedMij , by NHS Scotland , in Denmark by SSI and even across the USA in the Veterans Organisation.

Let's find out what would be needed to do so in Belgium

To get to that point, we return to the data, about which I have some worrying news. Reliable investigation makes it clear that plenty of faulty, misaligned, misplaced data exists.

Even to such an extent that in the media they clearly stated that 65% of IT managers and doctors don't trust the data in their systems.

This is also reflected in the survey on #SumEHR data, where we have a situation where the hospital doesn't trust the GP (General Practitioners) to fill out all the data. And where the GP doesn't bother to fill out the data as the hospital isn't using/believing it anyway.

I would suggest, that in a country where on a daily basis we see an enforcement of integration and creation of hospital networks, #BiHR, European Health Data Space, ...}, we start at the beginning and determine whether we have Clean Data.

Clean data

Clean data means we have to ensure that the data that HAS BEEN COLLECTED is consistent, complete and reliable.

This starts at data entry but doesn't stop there, as it is an integral part of data structure inception. They key motivator here is GARBAGE IN = GARBAGE OUT, something we all understand. But in an industry where paper ruled for so long, moving to digital has not gone smoothly.

Digital data is only searchable when done properly and according to exacting standards! And there is the first human issue. When in a hurry, people scribble a note in a paper file, it will still be found and read next time. Digital data goes in fields and when it doesn’t match a search or is in the wrong field, it will not appear when needed.

The hospitals are talking about merging data or even merging their EPDs. But if there is already doubt about the correctness or completeness of the data, aren’t we making things worse?

If the ultimate goal is to reach a system where the patient is treated in their most comforting environment, isn’t having ALL RELEVANT data available anywhere were the patient is key?

We would advocate that these are the necessary steps required to grow and expand data flow:

1. Data conception, taking the time to discuss with the people who have to do the input. To make it work in accordance with their customs and needs. Making sure that their process is easy and fast.

2. Data verification, having a clean and clear overview of input, making false/faulty entry as difficult as possible.

3. Agree on terminology, across languages but also across regions, as language isn’t just different between countries but also influenced by regional differences (us English vs Australian or UK English)

4. Check all existing entries, as well if they have been entered in the correct fields

These elements are preparative tasks to be taken before we take the step up to merging or even relying on additional information being available. If we don’t take these steps, we risk the same stale-mate situation we currently have with the SumEHR information!

Trust

Let’s start by assuming that the previous point of clean fata can be resolved, partially through manual labor + Machine Learning and NLP. That alone will build a massive amount of trust in the existing data. But to then share that data, means we need to build a safe and trusted way of doing so.

When we want to share data, we als need to establish between who and how we want to do this.

The WHO:

• Patients
• Hospitals
• 1st line GPs
• 1st line all others
• Arbeidsgeneesheren
• Laboratories
• Secondary use partners (more on this later)
• Insurance companies
• Governments

With this many parties involved, it means there are different drivers that interact and often counter each others actions. What therefore is needed, is a system where the rules of GDPR are purified and used as they should, for the betterment of the patient!

This means that the only viable system is one that encompasses the following (without trying to be complete):

1) The data needs to be under the control of the patient. This does not mean that the patient can delete or change the data, but that they can check and have it changed when mistakes are found. This also means that the patient is capable of allowing or blocking access to people trusted by the patient. Most efficient method to do this is by federated authority and segmentation of the data.

2) Separation of data types, where we solve the issue of ownership by having results and diagnosis available as separate sets of information. The data, raw results of blood screening for instance, should be separated from the diagnosis a doctor makes based on them.

3) Strong authentication and encryption can be provided by tools such as the digital ID/ITSME/... while non-repudiation and authenticity can be provided by digital signature, again enhancing the ownership and responsibility.

4) Community care, where the patient can share information with (non-)medical caregivers as no person is an island.

5) Enablement of secondary use through the user, needed and partially regulated in the European Health data Space and Belgian Integrated Healthcare Record. This would mean having patients make their data potentially available by allowing them to “advertise” what they could potentially be open for.

Putting a system in place that would allow the effective utilisation of the data of all patients would allow hospitals to find a structured way to streamline the EPD issues they are currently facing. Changing EPDs, is a multi-year operation and might better be postponed because doing so without addressing the issues above, they might make things worse.

Now that we quoted the components and the actors, let’s identify the steps that we need to do to give patients better access to their medical records thanks to the components and actors quoted above.

What do you think about my views? I’d love to hear about your thoughts and if you want to give your point of view, positive or negative, please don’t hesitate to reach out to me personally.

The purpose is never to complain, but try to come with solutions! #1patient1record4Belgium was founded just for this reason, to analyse the situation and assist in finding solutions for the issues at hand.

Jan Vekemans

#gezondheidszorg?#healthcareit?#sante?#healthydata?#1patient1record4Belgium

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