Door Vonk, co-founder and CCO of ‘Tired of Cancer‘ ran her own consultancy firm for many years. There, she raised funds for all kinds of projects, mainly charitable organizations such as the Ronald McDonald Children’s Fund. Through her work for the Helen Dowling Institute she got to know Bram Kuiper, at the time CEO of the HDI and who had, as a psychologist, decades of experience with the treatment of cancer patients struggling with psychological problems as a result of their illness.
Together they came up with the idea for an app that ultimately led to the Untire app. A self-management program for (ex-)cancer patients with cancer-related fatigue problems. The app not only gives them insight into the cause of their complaints, but also offers them tips on how to gain more energy and improve their quality of life. Moreover, it is an accessible tool that is now used by (ex-)patients and is also embraced by healthcare professionals.
How did you come up with the idea for the Untire app?
The Helen Dowling Institute (part of GGZ Nederland, the Dutch Association of Mental Health and Addiction Care which also provides psychological care for cancer patients, ed.) was already active in the treatment of cancer fatigue. Initially on a face-to-face basis and then via internet therapy. The outcome of the research into this form of online help was very positive, as it allows you to help a very large group of people who you otherwise wouldn’t be able to treat face-to-face. This online therapy inspired us to develop our app in order to support as many (ex-)cancer patients as possible.
What is your product made up of exactly?
The Untire App offers a self-management program in the form of information and education. All sorts of things have also been added. Such as an exercise program, a sleep program and nutritional information. We have consulted experts for this, e.g., physiotherapists, sleep and nutrition experts.
What the app does is provide insight into your own energy balance. Where do you get your energy from or how do you lose it? What drains your energy levels the most? This may be stress and anxiety or the fear of the return of an illness. But it might also be a deteriorating relationship with your partner. Things that constantly affect people, without them being aware that these spend so much energy. Of course, we can’t say can say: we will resolve that anxiety for you. That anxiety is realistic too. However, you can learn to understand what it does to you and learn how to let it cost you less energy. The app can suggest several ways of dealing with these themes.
We use the insights from cognitive behavioural therapy, whereby you utilize your thoughts to behave in a different way. Along with mindfulness techniques, where it is said that all thoughts are temporary. They come and they go. It also includes very practical tips. It is highly personalized and allows people to do what suits them best.
Could you give us a concrete example?
Take worrying and fretting, for instance. You wake up at night, and your head is going berserk. By keeping to a daily 15 minute worry session and writing down all your concerns, you can teach yourself to say to yourself at night: I don’t have to think about this now, I can have 15 minute worry session about this tomorrow morning. Obviously, that’s not a quick fix. But if you work on it, it really does help.
What need does the app cater for?
The main side effect of cancer and its treatments is extreme, prolonged fatigue. At least 80% of (ex-)cancer patients suffer from it in their first year. While in about 30%-40% of cases, the symptoms persist for a much longer period of time, even up to ten years. Patients and healthcare professionals all acknowledge that this is a very serious problem. At the same time, it is a very complex problem. We have excellent healthcare in The Netherlands. And these healthcare professionals do really try to do something about these fatigue issues. At least the physical causes, like anaemia. But if no physical causes can be established, we see that healthcare professionals find that they’ve got nothing on hand to offer.
Aside from that, the problem of fatigue is often difficult to understand for the (ex-)patient’s immediate circle. All the more so when you don’t see any of it on the outside. You can use this app to provide insight into energy levels, not only for the (ex) patient, but for their immediate circle as well. This leads to a greater appreciation and understanding.
Ultimately, we see that our app is increasingly being used by healthcare professionals in hospitals, including nurses, but also by physiotherapists. They recommend the app to their patients.
What makes the Untire app stand out?
Worldwide, all kinds of apps exist that focus on our target group in the oncology domain. However, most of them are focused on measuring and monitoring. What distinguishes our app is that it is a very inexpensive and accessible tool that can be used by a wide range of people. Not in place of therapeutic care, but as a complement to it. For people who otherwise don’t get care.
What have been the experiences with the Untire app?
We are in close contact with users, amongst others via patient groups and focus groups for patients. Plus we get positive reactions from people who benefit or have benefited a lot from it. What this shows is that the app provides 1) an acknowledgment of the problem, 2) that you’re not alone and 3) that you can get a grip on your problem and are able to do something about it yourself.
The University of Groningen has also conducted research into the effectiveness of the app among 870 people. This research has shown that there is a significant reduction in fatigue as well as an improvement in the quality of life. So, the app is effective. Insights from this or any other study are incorporated into upgrades of the app.
Were there any difficult moments during the development of the app?
We have come a long way as an organization. Of course, we had to deal with issues such as funding and investment along with the recruitment and management of a new team. But the hardest part was going from nothing to something. Transforming the idea we had in mind into a concrete and tangible product, and involving all sorts of people in it, turned out to be a very tough and complicated process. Fortunately, we can now say that we have succeeded. And obviously we will constantly work on improving it in future.
The app is certainly very useful now, what with the Corona virus
That’s right, although therapy currently takes place almost exclusively via online chats or video calls as it is, and our app offers a program that can be accessed from home by a large group of people. Digital healthcare services that can help people remotely are set to expand even more in the future.
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