Researcher Karin Gehring developed the ReMind app

The discovery of a brain tumor turns your world upside down. Not only the patient suffers from this, but also the immediate environment. It is often relatively young people who are diagnosed with this. They would like - if that is still given to them - to return to social life. But functioning normally again in a family or taking up your work is a challenge. This is because the brain tumor and its treatment can lead to cognitive problems. The vast majority of patients suffer from it at some point. Well-known symptoms are forgetfulness and difficulty concentrating or adding structure to your actions. Fortunately for this group, there are options for faster rehabilitation, such as the ReMind app. Researcher Karin Gehring of Tilburg University was at the cradle of this. With the iPad application, patients can develop strategies to improve attention and memory. The app also contains a game to increase concentration. A long process preceded ReMind. We spoke about this with Karin.

Where are the roots of this app?

 “It started in 2003 with a study into cognitive rehabilitation of brain tumor patients, together with professor Margriet Sitskoorn. We were looking for a treatment that could help this group. Hospitals submitted patients for a large study, in which 70 patients were treated and 70 were not. An intensive investigation. A number of assistants and I visited patients at home for six weeks, two hours a week across the country. I obtained my PhD there in 2010. It was the largest study in this field and our treatment program proved successful. The treated patients improved in memory and concentration and were less mentally fatigued compared to the untreated. ”

How did you come up with developing an app?

 “When I went to work temporarily in Houston after the research, I got a call from Petra Hoogendoorn. She was very passionate because she had a partner with a brain tumor. She asked me: what are you going to do with the results of the research? I said the only thing I can think of is that we turn it into an app and make the knowledge widely available. Petra wanted to tackle this together. I had confidence in that because she is a very enterprising lady. She organized a street dinner in Weesp, which attracted 850 people. This yielded 20,000 euros. We used that as our own investment in a subsidy application. ”

How did the start go?

"Slow. In 2011 I started working on the app with Petra, Margriet and creative project leader Peter Boonstra. But the first app builder we hired turned out not to be used to working with scientists. That is why we switched to a new one that could handle a limited budget. With blood, sweat and tears, the Dutch app and an English version were created. ”

I have often thought: should I actually pursue this?

As a researcher, did you feel sufficiently entrepreneurial?

“I have often thought: should I actually pursue this? Science is always busy publishing. The time you invest in doing business cannot be spent on publishing. Valorization and making an impact are not valued by everyone. Fortunately, Margriet always supported me.”

It took a lot of stamina…

“Whenever we thought: we are there, we weren't there yet. You are not finished building an app in itself. If you want to do it right, you need a flow of money for maintenance, support and keeping the app up to date.”

How did you manage?

“What helps is that as a researcher you are used to overcoming obstacles. In addition, it is great to work with an enthusiastic team on something that is valuable to people. We also felt it was a moral responsibility to do something good with those gifts. That motivates.”

Looks like you've come to an end. The app was successfully tested in hospitals in Brabant last year. Is a breakthrough imminent?

“We are working on making it a success at home and abroad. The University of San Francisco is working with the English-language app in a study. In France, a radiotherapist from the oncology institute Gustave Roussy has taken it as his mission to translate our app into French. He raised 50,000 euros with a charity dinner.”

I assume that the insurers are considering including it in the package. You were a pilot project of Zorgverzekeraars Nederland…

“We are not that far yet. High demands are made. For example, the app must be available on various devices. We are working on that. In addition, insurers not only look at the app itself but also at the guidance (largely remotely) around it, as we have tested in the Brabant hospitals. They are strict on proof of effectiveness, despite the amount of research we have already done. What matters is that our app saves society costs - people can return to work faster, for example - while insurers mainly look at saving healthcare costs."

Is it the intention to make it a commercial success?

“We work from a foundation. That is more accepted than a profit-driven company. We sometimes hear that we are too nice. Some colleagues say: use it more commercially.”

What do you think is necessary to develop it really well?

“A project manager who will go all out for this from now on and makes the difference. We are working on that.”

What would you recommend to other scientists who want to build an app?

“Choose the right app builder and draw up contracts for intellectual property right from the start. I also recommend a Petra to everyone. It is great to see how, through her experiences with this app, she has developed into an e-health expert.”

What made this adventure worthwhile?

“The patients and partners who benefit from the app. For example, I still remember a man who had learned from ReMind that he should not do odd jobs when it was too busy around him. When he stopped, his wife asked him: why are you stopping now? He was able to explain to her how it worked for him thanks to our app. In fact, you should also involve partners in the treatment as standard. It is very difficult for them. A study shows that the workload of a caregiver of a brain tumor patient is 11.7 hours per day. Compared to that, the appeal to my stamina is not too bad.”