VISUAL GENOMIC REPORTS – AN EXERCISE IN CO-DESIGN AND CO-OPERATION
Gráinne Butler1,2,3, Camilla Andersen4, Cathy Quinlan1,2,3 1Murdoch Children’s Research Institute, Melbourne, VIC, Australia2Royal Children’s Hospital, Melbourne, VIC, Australia3Department of Paediatrics, University of Melbourne, Melbourne, VIC, Australia4UWA Law School, Perth, WA, Australia
Abstract
Aim
To develop a visual tool to support non-genetic clinicians in understanding genomic reports.
Background
Genomic testing has moved from the realm of research to routine care. Benefits of identifying an underlying genomic diagnosis include optimising disease management, easier access to information and support and reproductive planning. It is cost effective and may end a lengthy diagnostic journey. Many clinicians have trained and worked in a largely pre-genomic era. Traditional genomic reports contain pages of text dense format with heavy use of medical or scientific jargon. The Comic Contract Project at the law school at University of Western Australia have been working on
visual employment contracts. Their goal was improved comprehension using plain language and engaging visual images. They achieved over a 90% reduction in word count and demonstrated improved comprehension, engagement, and a reduction in disputes.
Methods
We used the American College of Medical Genetics guidelines as a basis to differentiate evidence used. We developed a visual genomic report in collaboration with the Comic Contract group at UWA, combining the use of plain language and colourful graphics. We recruited 26 Nephrologists and trainees for initial testing of the visual report.
Results
We received survey feedback from 25/26 participants. 90% of respondents felt the report was structured logically, had useful imagery which assisted in understanding the content and that the report would be helpful in assisting doctors to explain results to their patients. Qualitative feedback was overwhelmingly positive ‘clear, concise and simple’, ‘excellent resource, easy to read’, and ‘helpful to simplify things’ .
Conclusions
A visual genomic report is an accessible and acceptable format to support non-genetic healthcare providers in interpreting traditional genomics reports.
Biography
Dr Gráinne Butler is a General Paediatrician and currently a full-time PhD Student at the Centre for Health Analytics and Department of Nephrology at the Royal Children’s Hospital, Melbourne. The focus of my PhD is using data from the electronic medical record to identify early markers of genetic kidney disease in children. The secondary focus is the development of genomic educational resources for nephrologists.