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Interactive Tool to Improve Patients' Understanding of Genetic Test Reports Gets Positive Reception

NEW YORK – To help patients understand genetic test results and the treatment implications associated with them, a group of researchers developed a web-based interactive tool called HOPE-Genomics with the goal of improving the delivery of precision cancer care.

The HOPE-Genomics tool integrates somatic and germline sequencing results along with multimedia genomic education elements, including interactive features, such as the ability to request genetic counseling. The group, led by Stacy Gray from the City of Hope Comprehensive Cancer Center, tested the prototype of the tool in English-speaking patients, family members, and providers to see if it helped patients better understand their disease, communicate effectively with their providers, and be more open to molecularly guided therapies.

In the Journal of Clinical Oncology Precision Oncology this week, Gray and colleagues published the feedback from focus groups involving cancer patients, family members, and providers, who generally received the tool positively. The researchers plan to work with genetic testing laboratories to facilitate integration of such patient-friendly reports in the clinical workflow.

Germline and somatic genetic testing have become integral in cancer care. Providers use the results from germline tests to inform cancer prevention strategies. Results from somatic testing, and in some cases germline testing, can guide personalized therapy selection.

However, researchers have found that when patients don't fully understand genetic test results, it may hinder their access to precision medicine. The team felt that increasing cancer patients' genetic testing knowledge can improve care, and thus worked to create a web-based, "patient friendly" version of a report from a sequencing lab, called Helping Oncology Patients Explore Genomics (HOPE-Genomics).  

The study included patients with solid tumors at City of Hope, one adult family member of each eligible patient, and clinicians who order somatic or germline genomic testing. The study participants interacted with a prototype of the tool to learn the sequencing results and clinical information of a hypothetical lung cancer patient. The tool consisted of about a dozen web pages, external education links, and other interactive features and visual cues to help comprehension. The tool binned genomic results into three categories: actionable cancer, additional, and unknown. Prognostic information was "locked" and required patients to opt in.

The researchers then held 90-minute focus groups with the study participants to gauge their understanding and experiences with the tool. On the whole, patient and family members who participated said the tool was straightforward and easy to follow, and felt that the provided information would better equip them to discuss the results with their providers. However, patients and families had varying reactions to the visual representations of the "actionability" of results, and some wanted more explanation.

Providers also agreed the tool could facilitate more efficient conversations with patients and help with pretest counseling. However, some providers expressed concern that the "binning" of results into categories was oversimplified and that the terms "actionable" and "additional" could be confusing.

Patients and providers responded more ambiguously to the prognostic information provided in the report, including to whom the information should be provided and when it can be unlocked. Participants had varying views on whether patients should run through the tool prior to meeting with their providers or go through the information with their providers during an office visit. Both patients and providers liked the sharing option embedded in the report.

In a post-focus group survey, the researchers found that all participants had a high interest in seeing a patient-focused, web-based report of their results and 88 percent were satisfied with the HOPE-Genomics tool. Of the providers, 94 percent said they were interested in providing the tool to their patients.

In response to feedback, the team modified aspects of the HOPE-Genomics tool. For example, they included an opt-in mechanism for patients to access prognostic information. Down the line, the group hopes to develop this tool as an open-source application that can be integrated with multiple electronic health records and distributed for use to laboratories and health systems.