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‘A congenital heart defect always has an impact’

More and more hospitals are using telemonitoring to support patients at home. Heart Guide, a digital care concept from the Netherlands’ Cardiology Centra (CCN), is an inspiring example within this field. Patients measure their own blood pressure, weight or heart rhythm at home. An app coaches the patient and alerts the right healthcare professional if necessary. Visits to the emergency care department have fallen dramatically among users.

cardioloog AMC

HartGuide is currently used by people with heart failure, high blood pressure and atrial fibrillation. Amsterdam UMC and CCN are now investigating whether people with congenital heart defects are also better off with telemonitoring. This year, a Randomised Controlled Trial will start under the supervision of cardiologist, Michiel Winter. Luscii talked to him about the setup of the study and the future of telemonitoring.

 

A congenital heart defect, is that common?

‘Around 50,000 people suffer from the defect across the Netherlands. Thankfully, most disorders are mild. But there are also those born with a complex condition, such as patients with only one functioning heart chamber. Surgical techniques have improved in recent decades. The number of people living with congenital heart disease is therefore increasing. Babies who died shortly after birth in the 1980s now have much greater chances of survival’.

Can you grow old then, as a patient? 

‘With a mild defect, your chances these days of growing old are almost equal to those of healthy people. Yet, this isn’t the case for serious problems. Some people undergo multiple operations in their childhood. Things may go well for many years, but at around 40, they inevitably develop heart failure. In any case, a birth defect always has an impact, for example in the form of atrial fibrillation’.  

Do you expect telemonitoring to make a difference?     

‘Absolutely. Normally, these people go to a hospital with specific expertise. But that is expensive for society and the journey is stressful for the patient. With HartGuide, we can reassure patients remotely when everything is fine. If there is a serious problem, such as heart failure, then we see it arising sooner, as we monitor the patient’s weight, blood pressure and well-being at home. And we can therefore intervene earlier. The research will show whether it works that way in practice, but I am confident it will’.

What are your most important research questions?

‘We will look specifically at people who visit the outpatient clinic at least twice a year with complaints. Is it possible to prevent acute moments by guiding them remotely? We do not immediately expect visit clinics to decrease, as it is all so ingrained, instead we hope to really focus on preventing acute situations’.

And what will the research look like in practice?

‘We will assemble two groups. One group will be supervised at home via HartGuide. The other group will receive regular care. And in two years, we will compare the differences between the two. It is actually a nationwide research study. We are talking to a number of hospitals about including their patients. At least two hundred patients are needed to form a clear picture’. 

What did the medical ethics committee think of the setup?

‘The handling of patient data in particular raised questions. Normally, this information remains secure within the hospital’s walls. With the e-health design, the data is sent from home via Luscii’s digital platform to the Medical Service Centre of HartGuide. There it is interpreted by doctors and nurses, and afterwards, I receive a call to discuss the findings. Questions were asked about that. Who exactly does the patient’s data belong to? And where is the information stored? In the end, we worked everything out and developed a clear protocol of how to deal with such concerns’.

How do you see the future of telemonitoring?

‘I actually expected digital development to go faster. Everyone nowadays has Netflix and Google Maps, but we are still a bit behind in the hospital. Collaboration with businesses, such as Luscii, is in my opinion the key to success. I am a cardiologist. I was not made to set up a company or deal with logistics. Moving care from the hospital to the home is such an adjustment. We definitely need the businesses, but with our own ideas, too. If we work well together, I believe that the entire cardio clinic can eventually switch over to remote guidance at home. Provided that an effective system of expert supervision has been built around it. Then patients only have to come to the hospital if something is really wrong’.     

Are patients ready for that too? 

‘I have eighty-year-old patients who Skype with their grandchildren. That is not the problem. Healthcare professionals are the ones who must make the switch correctly. But don’t underestimate that task. As a doctor, I am used to seeing patients. I trust my clinical view. Letting that go is complicated, although I believe video calling offers plenty of opportunities in that regard’.