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ParkinsonNet takes the lead in eHealth

ParkinsonNet takes the lead in eHealth


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The Eindhoven Medtech Innovation Center (e/MTIC) aims to accelerate medical and technical innovations in healthcare. For example, by securely sharing more relevant data. Ph.D. students, experts, and scientists from the Catharina Hospital, TU Eindhoven, Máxima MC, Philips, and the Kempenhaege epilepsy and sleep center can benefit from this in an innovative way. Last Friday, they met for a conference at the Muziekgebouw Eindhoven.

Such a conference is an excellent opportunity to learn from mistakes and successes regarding eHealth, also known as as digital healthcare. That things are serious, is evidenced by the fact that the government has put 69 million into the National Growth Fund to set up a national infrastructure for healthcare data.

“Eighteen years we had to wait for that,” Bas Bloem, the ever-driven professor of neurology at Radboud University in Nijmegen told the audience. Bloem is an expert in Parkinson’s, a chronic and progressive movement disorder. 

With Dr. Marten Munneke, Bas Bloem founded the internationally acclaimed ParkinsonNet in 2004 to improve quality of life and treatment. It is now a sought-after export product. Collecting relevant digital data on the debilitating disease and sharing it with scientists, researchers and practitioners, is of paramount importance.

Ten million diseases

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“There is no such thing as the Parkinson’s disease. There are as many diseases as there are people with Parkinson’s,” stated Bloem. That is why, as a neurologist, he increasingly recognized the importance of customization. Because every affected person struggles with their version of the disease. In Eindhoven, the neurologist especially tried to show what is often lacking in healthcare: patients behave differently in a hospital than they do at home. In a well-lit corridor on a hard-wearing tarpaulin in a hospital, a Parkinson’s patient walks differently than when they have to find their way to the toilet at home, slaloming on a poorly lit landing between a closet and a secretary.

“They even take extra medication to impress me. What I’m interested in are the problems at home that remain largely invisible when they come to me in the hospital. The hospital is the wrong place to receive these people. As soon as they see a doctor, they tell a different story.”

It got Bloem thinking. How do you get data from behind the front door? His finding: combine social networks with eHealth. Although he immediately adds a disclaimer there: use eHealth as a means, not an end.

Network

ParkinsonNet turned out to be an excellent opportunity to ask questions about patients’ needs and requirements. “For example, we were able to ask patients about their top priority. From that came, for example: give me a place where I can go 24/7 for all my problems that can be solved immediately. Or that at least there they can tell me where to go. For many patients, healthcare is a jungle. They can get lost in it and have no idea where to go.”

The efficiency gains did not take long to materialize. Next, collaboration was sought. “The idea was that the patient does not come to Radboud Hospital, but that Radboud shares knowledge with local hospitals to make local teams work better.” 

Technical innovations

eHealth only works if you combine that with the passionate professional, Bloem said. That will not change because of technological innovations. If only enough reliable information is available, then patients can also work out on their own and not have to wait for the medical system.

“People are more than their disease, you have to make the contact moments with the medical establishment as less frequent as possible so you can be the wife, husband, friend, mother, and colleague. If you measure yourself every day, then you are a full-time patient.”

Smartwatch

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An excellent tool for this is a smartwatch that collects data about a patient almost 24/7 without a doctor’s involvement. Bloem: “We base our findings on what we see in terms of results in the hospital but you see that those are snapshots that don’t correspond to the data we get through the watch. Through a dashboard, users can easily see if they are doing well (green light) or if they need to call the portal (yellow light) where they will be referred immediately or if they need to take action as soon as possible. This is how it should be. Then the question is: Will digital technology sideline the doctor? I don’t think so.”

ParkinsonNet now operates nationwide and more than 3,700 professionals have been trained; from physios to nurses. There is a digital community that allows different networks to connect and function better. Meanwhile, every Parkinson’s patient in the Netherlands can very quickly see via their zip code where help is available very close by. They get a road map and can see which doctors are involved, what they look like, what they have done, how they work, and how much experience they have.

The latest study, still very fresh according to Bloem, shows that in addition to a national network, there are seventy regional networks. Research is being done into how well those networks are aligned. That is where Bas Bloem believes there is still much to be gained. “Some hospitals are on an island, others think much more multi-disciplinary. Ultimately, it’s all about the patient’s personal wishes. That requires precision management.” 

Björk

He comes up with two examples retrieved through digital research. A man who walks better to the beats of Björk and a fellow sufferer who shoots into motion to the emotional music from the opera Orpheus and Euridice. According to Bloem, a patient’s question of whether they should do exercises is difficult for a specialist to answer. But if you combine the patient’s question and the specialist’s knowledge with large amounts of data, doctors can draw better conclusions. According to Professor Bas Bloem, that is where there is great significance and progression for eHealth. 

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