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

Project Final Report (PDF, 207.62 KB) Disclaimer

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

Citation:
Gray S. Empowering Cancer Patients Through Innovations in Information Technology-Based Reporting of Precision Medicine - Final Report. (Prepared by Beckman Research Institute - City of Hope under Grant No. R21 HS024984). Rockville, MD: Agency for Healthcare Research and Quality, 2019. (PDF, 207.62 KB)

The findings and conclusions in this document are those of the author(s), who are responsible for its content, and do not necessarily represent the views of AHRQ. No statement in this report should be construed as an official position of AHRQ or of the U.S. Department of Health and Human Services.
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The design of a cancer genome sequencing report that improves patient understanding has the potential to advance the quality and delivery of personalized medicine in oncology.

Project Details - Ended

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. Early evidence reveals that, despite rapid adoption of genomic testing in cancer, many patients fail to understand basic information about cancer genetics or the defining genomic characteristics of their disease. The goal of this research was to design a dynamic web-based cancer genome sequencing report called Helping Oncology Patients Explore-Genomics (HOPE-Genomics), to improve patient understanding of cancer genetics and their test results. Through better informing patients, the long-term goal is to improve the quality and delivery of personalized medicine to oncology patients.

The specific aims of the project were 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 (EHR). 
  • Evaluate the feasibility and acceptability of delivering sequencing results and genomic education via HOPE-Genomics to cancer patients treated in academic and community settings. 

Researchers conducted a needs assessment by survey to better understand how a patient-oriented results application would help fill knowledge gaps that current cancer patients face. Researchers also conducted patient, family, and clinician focus groups to assess the usability of the HOPE-Genomics report. A static mockup of the application was designed to display to focus group participants with the goal of using their responses to guide further application development. The interview responses were used to inform subsequent application development, done in tandem with a professional application development team. The developer built the web-based, dynamic version of the HOPE-Genomics application on the Substitutable Medical Applications, Reusable Technologies (SMART®) on Fast Healthcare Interoperability Resource (FHIR®) platform, which can be directly integrated with EHR systems for improved scalability and integration into clinical workflows.

Stakeholder design preferences were joined with patient data from the EHR in the HOPE-Genomics platform to create a functioning prototype that will be piloted with participants in the coming year. The application was built and then integrated into a secure server at City of Hope National Medical Center and has been validated with real patient data. Unfortunately, unanticipated technical problems with the app development and City of Hope integration delayed the pilot testing in the clinic. However, the application is now ready for pilot testing and researchers are actively recruiting patients and providers for the pilot study. Clinicians believed the tool could help patients formulate questions and facilitate patients’ communication of results to family members. Researchers were recently awarded a grant to continue developing and deploying the HOPE-Genomics application over the next 5 years.