We, the Patient Involvement in Oncology (PATIO) initiative, want to make the voices of prostate cancer patients and their caregivers heard in medical research. In fact, we know that we currently don’t know enough: you are the experts holding the day-to-day experiences of living with the disease.
A considerable number of people are affected by prostate cancer in Austria. On the one hand, there were 68,130 men who suffered from this particular type of cancer at the end of 2018 (Statistics Austria), and on the other hand there are countless partners, daughters, sons, grandchildren and close friends who stand by the side of those directly affected by the desease. Over time, the caregivers also acquire more and more knowledge about prostate cancer.
Our goal is to make everyday life with prostate cancer easier for those affected with the help of a digital communication tool.
The diagnosis "cancer" is a drastic experience and probably prostate cancer poses a large challenge during therapy, as well as afterwards: in addition to the physical impact the disease may also affect individual interpersonal relationships, hobbies, your working life and your financial situation. It is your individual strategies for dealing with the side effects of cancer that can be extremely valuable not only to other people affected, but also for research!
This is exactly where the PATIO initiative comes in. We want to learn from personal stories and experiences of affected persons. Together, we want to find ways to improve the everyday life with prostate cancer for everyone involved. Since April 2020, we have been working closely with nine patients and one relative of a patient - and now you can become a co-researcher too!
We are currently looking for three more co-researchers who would like to join our team and share their knowledge and experience with us. In particular, we need more voices from caregivers!
The "PATIO" project is a particularly cooperative research project that combines scientific findings from medicine, linguistics and natural sciences as well as the practical know-how of persons affected by prostate cancer as social actors in Austria. The project is implemented at the Ludwig Boltzmann Institute Applied Diagnostics together with scientists from the academic field (LBG SHOW, ÖAW) as well as with a patient-spokesperson and co-founder of the support group for prostate cancer in Austria. In addition, nine patients and one relative contribute to the extended team with their knowledge and life experience. The "PATIO" project is currently funded by the Open Innovation in Science Center of the Ludwig Boltzmann Society until March 2022.