遗传疾病和遗传报告杂志

The Genomic Novel and Priority Mapping Tool: Using Empathic Design to Develop Innovative Patient-Centered Decision-Making Tools for the Genomic Testing Experience

Kiley J Johnson, Kimberly A Schahl, Pamela S Sinicrope, Tammy M McAllister, Jennifer B McCormick, Leslie E Ruckman, Mekayla I Beaver and Noralane M Lindor

Background: Genomic testing is now being conducted in clinical practice. There is a deficit of patient-oriented tools for learning about and making decisions regarding results from whole exome/ whole genome sequencing (WES/WGS). Methods: Empathic, novel, and multi-disciplinary design approaches to creating new products or services were utilized to develop our materials. Results: Interventions to promote articulation of personal priorities and hopes related to WES/WGS included a: (1) Patient Results Priority Mapping Tool; and (2) Genomic Novel, which included a worksheet called Spectrum of Influences. Conclusion: Using the empathic design process to identify key needs and develop interventions in the context of WES/WGS results disclosure provides the opportunity to identify unique needs and to develop novel study materials. The materials have the potential to facilitate communication about patient preferences and values and to address the practical challenges of large-scale decision making.