Good digital healthcare starts with the patient

Go to hospital less often and intervene more quickly if necessary. That is the promise of e-health.

It sounds so enticing, especially for people with chronic conditions. You no longer always have to go to the hospital, but pass on your heart rate, blood pressure and how you are doing to the doctor from your lazy chair. As a result, doctors know sooner when things are going badly with you and they intervene, or a check-up visit to the hospital is necessary less often when things are going well.

In theory, this approach saves lives and money. But implementing these kinds of apps and platforms is not that simple in practice. The promises were great when research into e-health started about fifteen years ago. But it has not yet taken off on a large scale. That does not mean that society does not benefit from this development, but it does mean that it is more complicated than expected to set up. That is interesting, especially now that due to the corona crisis, there is more attention than ever before for video calling and arranging anything and everything online. NEMO Kennislink is therefore looking at the pitfalls of digital healthcare with three specialists. We spoke to e-health experts Lisette van Gemert-Pijnen and Monique Tabak (University of Twente) and Valentijn Visch (TU Delft).

Cartload of apps

If you now look in the online stores of Apple or Google, you will find a cartload of apps from health insurers, hospitals and companies that want to make you live healthier or help you keep track of data about a disease. “There is a raffle of these kinds of applications. They have one thing in common: they almost all don’t work as expected. They spring up like mushrooms and disappear just as quickly as a result,” says Van Gemert-Pijnen, professor of e-health at the University of Twente. “That is because there is regularly only short-term funding for a project and there is therefore no time and manpower for the long-term implementation of e-health applications. It also often concerns apps that are of no use to anyone, because they are not properly set up and have not been developed from the end user’s perspective. A lot of time and money has been spent on apps and platforms that are doomed to fail.”

As an example, she mentions platforms for people with diabetes, lung disease, COPD and heart failure. “A lot of money has been invested in this from health care and insurance. It was set up as a research environment. Patients passed on all kinds of data about their health online under the name of better self-management for the patients. But the patients and their care provider, such as a general practitioner, were not involved in the development process themselves. In the end, it was virtually useless. Too much thought was given to research and technology: how can healthcare be optimized from a technical point of view? That does not work.”

That has to change, says Van Gemert-Pijnen. She emphasizes that e-health should be a service that revolves around care and patients. “You really have to talk to them first and map out what they want. What do they need? Suppose you want to monitor someone with diabetes at home, what exactly does this mean? How do you arrange that? Which devices are needed and how often should a patient use them? Does he see that? How does a healthcare provider look at this? You have to have conversations about this before you even design anything with technology.”

Short of breath

The two other experts agree with Van Gemert-Pijnen. “The role of patients is very important, because it is about them. So they have to be involved from the very beginning,” says e-health technology researcher Monique Tabak (University of Twente). She obtained her PhD on research into how you can help people with COPD with e-health. She is still engaged in this topic. “We want to gain insight into how disorders develop. Suppose someone digitally indicates that he is short of breath, then the next question is whether it is because of the COPD. Maybe someone is stressed or is there possibly another cause? We therefore combine that data with computer models. This artificial intelligence works together with the doctor, but also with the patient.”

How does that work in practice? Tobacco wants patients, decision models and doctors to ultimately make informed choices together. This also includes the wishes of patients. Suppose you are short of breath and you have a driving test soon. Then you not only put a computer model to work, but also start a conversation between doctor and patient, because they know your medical history and have a lot of knowledge. The patient again knows how he or she responds best to stress. “People with chronic conditions often have a lot of knowledge of how they react to certain things and what influences them. This is just one example, but we want all parties to continuously help each other in a new so-called ‘shared decision-making tool’. The patient also contributes to the decision on the treatment plan. To do this, it is necessary to make what the models do and how they work as transparent as possible, so that it becomes clear on the basis of which everyone makes decisions. I really hope that with this approach we prevent someone with a chronic condition from getting worse.” In the coming years, this will be further developed under the name re-sample in three countries: the Netherlands, Estonia and Italy.

Rapids

Due to the corona crisis, more and more applications of e-health are being used. In another article, NEMO Kennislink discusses this increase in digital healthcare. You read it here.

Reward works

In this type of research, the success of an app or platform stands or falls with the motivation of patients to participate in it. Valentijn Visch of TU Delft specializes in this. “When a doctor or physiotherapist tells you to eat healthier or exercise more in the treatment room, people often forget that when they leave the hospital or practice,” he says.

E-health offers opportunities to really do something about it and to remind people about it more often. Suppose you get a lot of sports and a groin injury. Then you often want to do everything you can to recover in the beginning, even if the exercises are boring. But after a while, the focus wanes. “At those moments, it helps if you can respond to that with e-health. For example with reminders, by indicating how well you have already recovered thanks to your exercises or by showing how your exercises ensure that you have less chance of an injury in the future. Rewarding also helps. For example, you can give people points via an app via gamification or offer yourself a gift that you will be reminded of. A special football shirt from your favorite club if you keep doing the exercises faithfully.”

“There is a raffle of these kinds of applications. They have one thing in common: they almost all don’t work as expected. They spring up like mushrooms and disappear just as quickly.”

Intel Free Press, Wikimedia Commons

Moreover, it is possible to set up or personalize the apps or platforms in such a way that different individuals can benefit from them. Some people want to know everything about a disease, others not at all. “Suppose you have cancer. Then you send the group that wants to know everything about the chances of survival and the risk of chemotherapy extra information. If you are not interested in that, you only send the basic information and therefore guide you in a different way,” says Visch, who leads a research lab on e-health.

Regardless of how digital healthcare is used, the experts emphasize that giving feedback and providing insight into the ailment is very important. Visch: “Take people with osteoarthritis who have a lot of pain. With e-health you ask specifically what pain they are experiencing. What is the cause and how do they experience this when they have pain? In this way it is possible to give them insight into whether the pain is due to a wrong position, little sleep or an inflammation. In this way you help to find the cause and the aim is to learn from it and to experience less pain, for example by sleeping longer or avoiding certain sudden movements.”

But the success of these kinds of apps, tools and platforms also depends on whether doctors, nurses and hospitals are open to them. “It also has to fit within the existing systems that are used in healthcare,” says Visch. “There is also a need for attention. Because if something doesn’t work, both doctors and patients stop using it. We now know that e-health can only be successful if we really work together. We now have to put a lot of effort into that, especially now that everyone is so much more used to being online.”

In the theme Your data and you, NEMO Kennislink collaborates with NEMO in the exhibition Bits of You. This exhibition for adults, in which you experience how the data traces we leave behind influence our lives, can be seen until 9 January 2022 in De Studio van NEMO on the Marineterrein in Amsterdam.


Source: Kennislink by www.nemokennislink.nl.

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