Development, user and usability testing of MyCancerGene: A digital genetic health portal for patients who have received germline cancer genetic test results (Preprint)

• DOI: 10.2196/preprints.56282
• Publication Date: 2024-03-01T07:42:09Z
• Authors: Phillip Triue; Dominique Fetzer; Briana McLeod; Kathryn Schweickert; Lauren Gutstein; Brian Egleston; Susan Domchek; Linda Fleisher; Lynne I. Wagner; Kuang-Yi Wen; Cara Cacioppo; Jessica E Ebrahim...; Dana Falcone; Claire Langer; Elisabeth McCarty...; Kelsey Karpink; Shelby Posen; Enida Selmani; Angela Bradbury
• Keywords: Patient portal

<sec> <title>BACKGROUND</title> The use of multigene panels in clinical practice has created an increasing likelihood that cancer genetic testing will leave many patients with uncertainties regarding test interpretation, implications and recommendations, which change over time. We lack effective longitudinal care models to provide updated information results or medical recommendations obtain personal history updates. </sec> <title>OBJECTIVE</title> To bridge this gap medicine, we developed a patient provider informed digital health portal, "MyCancerGene," improve understanding responses testing, especially evolving landscape evidence risk information. <title>METHODS</title> used 5-step process develop the MyCancerGene tool. better understand interest willingness utilize first surveyed 307 who completed (Step 1). qualitative interviews 10 focus group 17 providers inform content function 2). Next, initial intervention 3) user 25 28 4). After prototype was developed, usability eight for feedback on final content, functions ease 5). <title>RESULTS</title> Patient identified high patient-centered portal support care. Potential advantages MyCancerGene, according providers, included: increased accessibility, convenience efficiency accessing their reports documentation, maintaining through educational resources. Both endorsed benefit tool updating family share new information, interpretation other changes. input key components tool: Landing Page, Summary Care, My Genetic Test Results, Family History, Provide Update, Review Resources Screenings Tracker. They also recommended functions, including ability download print materials inclusion reminders engagement functions. challenges included privacy/security concerns, potential electronic generate distress, need integrate existing portals. While were comfortable updates (even variant reclassification upgrades clinically significant results), had mixed feelings appropriateness sharing <title>CONCLUSIONS</title> extensive designed enhance affective behavioral particularly era <title>CLINICALTRIAL</title> NCT04774445