Empowering Cancer Patients Through Innovations in Information Technology-Based Reporting of Precision Medicine

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PROJECT SUMMARY The introduction of large-scale genomic testing in medicine promises to transform patient care. Cancer is at the leading edge of this revolution and hundreds of thousands of cancer patients receive tumor genomic testing yearly. Despite rapid adoption of genomic testing in cancer, many patients fail to comprehend basic genetic concepts and the defining genomic characteristics of their disease. Given that better-informed patients can more effectively engage in their care, and that greater knowledge is associated with improved cancer-related outcomes, there are significant concerns that patients' genomic knowledge deficits will contribute to poor quality care and outcomes. In this context there is an urgent need to educate patients about cancer genomics generally, and their sequencing results specifically, in a format that is usable, useful, and that easily integrates into existing clinical workflows. We propose to address this gap in care quality by identifying patients' needs for sequencing information and using that knowledge to design a dynamic, patient-facing, web-based cancer genome sequencing report that will integrate with the electronic health record (Aim 1). During the design process, we will elicit input from cancer patients, family members and clinicians to ensure that the web report is useful, usable, and that it easily integrates into clinical workflows. In the second phase, we will evaluate the feasibility and acceptability of delivering sequencing results and genomic education via the web report to cancer patients treated in academic and community settings (Aim 2). On completion of this project, we will be well positioned to test the effectiveness of the web-based patient sequencing report in a full-scale implementation trial. We hypothesize that when the web report is used to augment the return of cancer genome sequencing results, 1) it will increase patients' knowledge, their ability to actively participate in care, and their ability to share genomic information with family members; 2) it will increase oncologists' recommendations for genomically targeted therapies; and 3) it will improve patient-provider communication, care satisfaction and the efficiency of care delivery. This pilot and feasibility health IT project, addressing the Agency for Healthcare Research and Quality's Design Research Area, will leverage the IT network that we have developed which stores genome- sequencing data; generates dynamic, physician-directed reports; and matches patients to relevant clinical trials. Our commitment to open source development will allow universal access to the source code and facilitate widespread dissemination of the web-based patient sequencing report and IT network. By providing patients with direct access to their sequencing results, we aim to ensure that they understand the essential genomic characteristics of their disease and give them the knowledge that they need to actively participate in cancer care decisions. If successful, the project will facilitate patient engagement in care and serve as a critical step forward in the goal to improve the quality of cancer care delivery.