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

Project Details - Ongoing

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Summary:

The introduction of large-scale genomic testing in medicine promises to transform patient care. Cancer is at the leading edge of this revolution with hundreds of thousands of cancer patients receiving 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.

This project will address this gap in care quality by identifying patients’ needs for sequencing information and providing them with direct access to their sequencing results through a Web-based portal, Helping Oncology Patients Explore-Genomics (HOPE-Genomics).

The specific aims of this project are as follows:

  • Design a dynamic, patient-facing, Web-based cancer genome sequencing report--HOPE-Genomics--and incorporate it into a genome data storage and reporting information technology system that will integrate with the electronic health record. 
  • Evaluate the feasibility and acceptability of delivering sequencing results and genomic education via HOPE-Genomics to cancer patients treated in academic and community settings. 

During the design process, the project team will elicit input from cancer patients, family members, and clinicians to ensure that the Web report is useful and usable and that it easily integrates into clinical workflows. The second phase of the project will be an evaluation of the feasibility and acceptability of delivering sequencing results and genomic education via the report. By providing patients with direct access to their sequencing results, the aim is 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.

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