Journeys Through Genomics: Co-Producing Visual Resources to Communicate Patient Experiences

Abstract

Journeys through Genomics is a series of illustrations co-produced with patients and families to communicate their experiences of seeking genomic explanations for a health condition and the wider impact on their lives. The resources are embedded within qualitative longitudinal research exploring patient’s experiences of genomic medicine. This research takes place as genomic medicine becomes an integral part of mainstream care within the UK healthcare system. The depiction of genomic medicine often focuses on its technological components and the speed by which genetic code can be analysed, but here, we present a dynamic and situated understanding of the challenges genomic testing presents for patients and families. We describe the process of working with research participants and an artist to co-produce visual resources that illustrate the complexity of participant’s journeys, situating genomic testing within the broader context of their lives. These resources are designed to help future patients, families, and healthcare professionals understand the process, opportunities, and challenges they may face.