IMPROVEMENT OF PRECISION ONCOLOGY BY CITIZEN SCIENTISTS

It is safe to say that no one ever wants to receive a cancer diagnosis. Still, when a patient receives this news, the involuntary patient journey begins. Much like no two patients` cancers are identical, no two patients` journeys are identical, emphasizing the need for personalized care both inside and outside of the clinic. Even while dealing with cancer, many patients selflessly decide to contribute to ongoing research studies, supporting doctors and researchers who strive to provide innovative ways to personalized clinical care and improved outcomes. Yet it isnt the norm that patients and their families profit from this selfless act. This status quo is unacceptable. New sequencing technologies serve as the backbone of many of these studies and have made their way into various settings of routine oncology care. Sequencing allows the generation of genetic information, referred to collectively as genomics, which is the current foundation of precision medicine. The data is highly complex and difficult to access for both lay persons and untrained professionals, preventing patients from understanding how essential therapeutic decisions affecting their lives are made. As a direct result, patients primarily play a passive role throughout their treatment journey. In this initiative between the Institute of Human Genetics and the Division of Oncology at the Medical University of Graz, we will put the cancer patient in the role of the researcher and subject matter expert. We will be working with citizen scientists who have breast cancer, the most common cancer in women in Austria. Together with our citizen scientists and their family members, we will derive novel ways to improve the patient journey by improving the patient experience and evaluating ways of making precision genomics more accessible. Our objective is to let patients as citizen scientists develop a new experience and ways of data presentation so that they are able to actively participate in their treatment journey, relay these concepts to family and friends, and in turn impact other peoples lives as well. This project will help answer the following: (1) How do we best raise awareness about the impact and opportunities of precision oncology care, even early on in the patient journey? (2) How should we best educate patients so that they have the fundamental understanding necessary to be able to engage with clinicians on a deeper level, e.g. initiating a conversation about precision medicine approaches as well as having the capacity to discuss how treatment decisions were made based on their genomic data? (3) How do we translate these findings into a routine service? With the help of citizen science, our goal is to prepare patients and enable clinicians in the implementation of state-of-the-art precision oncology approaches throughout the entire patient journey, accelerating the adoption of precision medicine by hospitals, payers and providers.