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.

Every day, we researchers work with genetic data that reveals how tumors behave and respond to treatments. While we understand the complex layers of this information, we began wondering: What do patients actually know about the genetic testing that guides their treatment decisions? Do they understand that the DNA from their tumor can reveal which therapies might work best for them? This curiosity sparked our pilot project to bridge the gap between advanced cancer genetics and patient understanding. Drawing from our extensive experience with patients in genetic counseling sessions and those whose cases reach our Molecular Tumor Board, we explored how much patients with advanced cancer currently understand about precision oncology-and more importantly, how much they want to understand. Rather than viewing patients as passive recipients of complex medical decisions, we repositioned them as citizen scientists and experts of their own experience. We established three goals: raise awareness about precision oncology concepts in understandable terms, evaluate approaches for patients to engage meaningfully with their doctors about genetic test results, and explore how these insights might eventually transform routine clinical practice and the patient journey. We began with extensive interviews with patients with advanced cancer to evaluate the spectrum of current patient understanding, concerns, and wishes around personalized oncology. We then created a comprehensive guide that translates related concepts-from evidence-based medicine to the critical importance of Molecular Tumor Boards-into accessible language. Through further individual conversations with patients and their families, we refined this educational resource based on real feedback. Participants demonstrated genuine curiosity about the science behind personalized treatment and contributed valuable ideas for improving how medical teams communicate this type of information. Meanwhile, our clinical colleagues highlighted a parallel challenge. While hospitals routinely generate complex genetic data to guide treatment decisions, a tool for organizing and visualizing this information is necessary for doctors to spot patterns or explain results to patients. To address this infrastructure gap, we implemented cBioPortal, a specialized software that transforms genetic data into clear, interactive visualizations. It furthermore enables important analyses for oncologists and researchers. Building on our overall patient feedback, we have begun developing a digital learning platform featuring structured educational modules about genetic testing and personalized oncology concepts. This early prototype needs extensive testing and refinement with larger patient groups before we can implement it. However, our efforts show something important: combining improved patient education with clinical analysis tools can create a foundation for including patients more actively in their genetically-guided cancer care. We dedicate this work in the memory of Prof. Michael R. Speicher.