Breaking the taboo surrounding cancer with the YES!APP
Almost 500,000 Germans are diagnosed with cancer every year. The taboo surrounding the disease is just one aspect of many that makes it even more difficult for sufferers to come to terms with their own diagnosis. The non-profit yeswecan!cer gGmbH, founded by cancer patients in 2018, aims to connect cancer patients with the YES!APP. This digital alternative to traditional self-help groups pursues the goal of de-tabooing cancer in general, talking openly about the disease in society, and thus ultimately leaving no one alone.
Jochen Kröhne, managing director of yeswecan!er gGmbH, also emphasizes this: "Thanks to its digital networking, the YES!APP is particularly suitable for connecting patients with rare cancers (so-called rare diseases) such as glioblastoma, for example, which has fewer than 5,000 cases nationwide." Their launched hashtag #dubistnichtallein is symbolic of the pursuit of this goal.
In an interview with 5-HT, Jochen provides insights into yeswecan!er's work, explains how the team hopes to develop the YES!APP into a medical device, and how their participation in 5-HT's Insuring Digital Health has already potentially helped drive this effort.
A sorrow shared is a sorrow halved: Motivation for the foundation
Although medical progress means that cancer is treatable in many cases nowadays, fear, stigma and taboo continue to dominate the disease. "It is not uncommon for those affected to ask whether they themselves are to blame for the disease. We want to eradicate this cautious approach to cancer and give the disease a face through networking among cancer patients," says Jochen. Another goal is not to reduce those affected by cancer to just their diagnosis: "After all, they are still people who go about their work, have a family, play sports or pursue their leisure activities. By trying to encourage a certain relaxedness in dealing with the disease, we want to see cancer as just a partial element in life."
The media and television appearances, as well as the cooperation with celebrities, continue to stimulate this goal and ensure that the disease is talked about instead of swept under the rug. This also brings topics such as preventive care to the fore: "Because, of course, people don't like to talk about, for example, the gut, digestion and the cancer that can be related to it. But it's openness here that ensures the best possible early detection and chances of cure."
The YES!APP: Who it's for and how it works
Basically, the YES!APP is for all cancer patients: "This includes new patients, patients in treatment and remission, and former cancer patients. Our focus is particularly strong on all those with rare cancers."
After the app has been downloaded free of charge from the regular app store, registration takes place. In addition to the name and email address, criteria such as the specific disease and the phase of the disease are also requested. In the following, the users receive concrete offers that are specifically tailored to the disease specified at the beginning. This includes, for example, information based on the latest scientific research.
This range of information is expanded to include the YES!COACHES. Users seeking advice can contact these in writing or by telephone to find out about the disease but also about further topics such as financial support options. "In addition, users can specify topics of interest to them in order to receive news about them," adds Jochen.
In summary, the YES!APP is a community app that focuses on the patient, informing and communicating. Through mutual exchange in groups, practical questions that go beyond the purely medical aspect of the disease, such as "When will it continue?", "What can I do to improve my situation?" or "What tricks and options help?" can be answered individually.
How a non-profit organization is financed
The non-profit yeswecan!cer gGmbH is financed exclusively by donations, grants and sponsorships. An example of the latter is the program "CALL-IN", which takes place every Thursday at 6:00 pm. "In this weekly information program, scientists are interviewed by patients and doctors. The topics range from specific diseases to areas applicable to all cancer patients, such as combining the disease with nutrition, sports, love or partnership," Jochen explains. Further, he adds, "Even overarching topics such as fatigue or the chemo brain, both possible consequences of chemotherapy, are addressed."
yeswecan!cer GmbH & Co. KG is in turn responsible for planning and organizing the annual patient convention YES!CON. "This two-day event offers patients, physicians and politicians another opportunity to exchange ideas about cancer treatment. In addition, new forms, such as genetic early detection of the disease, or even impetuses to improve hospital meals will also be discussed." This year's YES!CON, which will be held for the third time, is scheduled for October 14-16 in Munich.
The yeswecan!cer gGmbH pursues with its non-profit work in no way profit-oriented purposes, which is reflected among other things in the fact that the money taken in flows exclusively into the society and cannot be distributed to the partners.
Do good and talk about it. What is yeswecanc!er particularly proud of?
"Several things," Jochen chuckles. "First and foremost, that we have managed to unite around 18,000 users in the app in just three years. In addition, we have now gained a high level of attention and awareness, as well as great support and positive feedback. Last but not least, we have been able to encourage many through the feeling of being part of a community. This is enormously important, because evidence-based science proves that people who feel cared for, well cared for and secure in a community have significantly better chances of healing and recovery than those who are desperate and despondent."
But Jochen feels that the big issue of digitization in medical technology is just as important: "Here we see ourselves as one of many small gears driving this process forward."
What are your plans for the future? And what role does 5-HT play in this?
"We have always felt that networking on the one hand and health insurance companies on the other play an important role for us. With 5-HT's generous offer, we had the opportunity to connect with the latter as part of 5-HT Insuring Digital Health. Contacting health insurance companies is of particular concern to us, as they are the enablers who can help us further develop the YES!APP into a medical product. In addition, as a non-profit organization, we hope for some support in our uncertain financial issue."
Jochen describes his impressions of Insuring Digital Health as follows: "It was a great setup of like-minded people. While the speed-dating concept was challenging, because it got all parties on point, it was enormously beneficial. In general, 5-HT's work strikes us as very forward-looking, constructive, collaborative, and focused on progress and networking.
Insuring Digital Health underscores all of that and is an event we look forward to attending again."
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