Patient expert and caregiver Karlien highlights pain points in medical data

door nexuzhealth op 19.9.2024

Karlien Hollanders once labeled herself a workaholic. She didn't think her career plans would change after her maternity leave. “Three months of maternity leave and back to work … that was the plan.” However, a rare disease affecting her daughter led to a different career path.

At the nexuzhealth summit, the network event for nexuzhealth customers, Karlien shared her rocky journey with her daughter Marie-Lynn and offered her personal perspective. She has since moved on from her career as a pharmacist. Today, Karlien, as an independent consultant, works tirelessly to ensure that healthcare providers speak the same language and share health data accurately and securely.

2409-NXH_Summit

Karlien Hollanders, Patient Expert

“After working as a substitute pharmacist, I joined a software company as a product manager, developing tools for pharmacists. I knew from experience what pharmacists needed and supported the optimization of the software. I worked hard and enjoyed it. That was the plan after my daughter was born,” Karlien recounts. “But just two months after her birth, she suffered from kidney failure. The emergency department didn’t recognize it immediately because it’s a very rare condition in babies. Another hospital intervened quickly. It was a very close call. That night, abdominal dialysis was started. This marked the beginning of a three-year journey of hospital visits. Marie-Lynn ultimately underwent two years of hemodialysis in Brussels. We spent half a day in the hospital almost every day of the week. The diagnosis? Primary Hyperoxaluria Type 1, a rare metabolic disorder where you have too much oxalate in your body. Considering that it takes an average of 4.7 years to diagnose a rare disease, it was truly remarkable work by the medical experts to determine the exact diagnosis for Marie-Lynn.”

Transplants and complications

Just as Karlien once immersed herself in her job, she now dedicates herself to providing the best care for Marie-Lynn. “By the time my daughter was two, she had already undergone a liver transplant and a kidney transplant. Now, we’re almost thirty operations and a series of infections and complications later. At one point, we were required to visit five different Belgian hospitals to receive specialized care. 

As a result, I had to survive on sick leave benefits for three years and travel across the country with Marie-Lynn. I’m fortunate to be highly educated and bilingual, as communication between different healthcare providers often faltered. Honestly? There would have been multiple medical errors if I hadn’t been able to communicate in two languages or check medication dosages. But I realize that not everyone has the luxury of a medical background or the ability to communicate in two languages. There is a medical record system, but it’s far from foolproof. Technology exists, but there is still a lot of work to be done…”

‘We should really be able to aim for a single medical record.’
Karlien
Karlien Hollanders

Patient Expert

Consultant for the Belgian Federal Public Service (FPS) Health

Due to her daughter’s rare disease, Karlien began to delve into everything related to hospital software, patient experiences, and the exchange of medical data. Today, she works as an independent Patient Expert, including two projects for the Belgian Federal Public Service (FPS) Health. “I’ve built a strong network and want to investigate how we can exchange crucial information. There are many data silos that need better alignment. We need to strive for a single medical record. Today, there are so many different health platforms like CoZo, Vitalink, MijnGezondheid.be, Helena… but none of them contain all your health data. Patients also have their own wearables that store data on their smartphone or in the cloud. There are too many sources. Moreover, as a patient, you can’t find what your general practitioner notes in their software. In summary: there is a lot of data, but a lot is still missing.”

The missing overview

“Many entities today aim to focus on prevention, but this goal remains out of reach because not all data is being captured. You need to have a complete overview before proceeding. Otherwise, you’ll make incorrect conclusions in your prevention policy. It’s very ambitious to highlight population management and use AI to find correlations, but we first need a complete set of data. 

Another example from Marie-Lynn’s case: not every specialist knows where she has had consultations. When you log in via CoZo, you’ll find over 408 documents for Marie-Lynn—she’s only nine years old!—and more than 250 prescriptions on e-recipe, with many simply labeled ‘magistral preparation’. This is of no benefit to anyone. Additionally, another app doesn’t allow for a parent-child link, and while my general practitioner could grant me access, he doesn’t know how to do so. Another example? During one of the many hospitalizations, I was asked to note her medical history in an admission form. I had three lines available…”

“I know I can’t expect a new specialist to take the time to review everything when we go to a consultation with Marie-Lynn. When I briefly summarize our story, we’re already half an hour in, while the consultation is only scheduled for fifteen minutes. Additionally, there are numerous errors in the medical record due to Marie-Lynn’s history being frequently copied and pasted, with any incorrect information simply carried over. The problem is that there are too many software solutions and these systems are not linked. We need to work with visualization layers: an anesthesiologist should be able to see the crucial data at a glance. If only limited metadata is available, you can’t filter effectively.”

The centralised electronic health, an essential building block for qualitative care
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The centralised electronic health, an essential building block for qualitative care

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Which data to share?

I acknowledge that not everyone is comfortable with sharing their medical data. For example, your dentist doesn’t need to know that you’ve had shoulder surgery. So, as patients, we should be able to choose what we share with whom. However, patients may not always be able to assess what information is useful to share. It’s a balance between sharing standard data and creating certain restrictions,” Karlien continues. 

“I’m currently working closely with a Norwegian scale-up that summarizes medical data using AI. It works very well, but ultimately, I’m uploading sensitive data. Am I 100% sure that it’s secure, private, or ethical? No, but I want to use their services. On that front, I expect more from our government. It’s unfortunate that the government didn’t limit the number of Electronic Health Record (EHR) providers in the past. Ultimately, they need to be able to communicate with each other…”

The journey forward

“What if my daughter ends up in an emergency department without me tomorrow? There’s no summary in her entire medical record that clearly outlines what she has gone through. I’m convinced that AI can make significant strides, but legal and ethical issues are more relevant than ever. For example, AI could quickly summarize important events from her medical history or provide an overview of her medication. But what if this information is incomplete or even partly incorrect? Is this a reason not to use it, or is it still better than manually going through 408 PDF documents…”

“Marie-Lynn is doing well today. She needs to go to the hospital every six weeks for a blood test, but despite her heavy medical history, she’s a cheerful and happy girl.”

Nexuzhealth invited Karlien to the nexuzhealth Summit to demonstrate the importance of a centralised electronic health record. And that our mission - to make digital care accessible, efficient, and secure for everyone - is more relevant than ever.
Topics: Events

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