Journal article
Co-design, implementation, and evaluation of plain language genomic test reports
GR Brett, A Ward, SE Bouffler, EE Palmer, K Boggs, F Lynch, A Springer, A Nisselle, Z Stark
Npj Genomic Medicine | Published : 2022
Abstract
Understanding and communicating genomic results can be challenging for families and health professionals without genetic specialty training. Unlike modifying existing laboratory reports, plain language genomic test reports provide an opportunity for patient/family-centered approaches. However, emerging examples generally lack co-design and/or evaluation in real-world settings. Through co-design involving patient groups, plain language experts, educators, and genetic health professionals, plain language genomic test report templates were produced for common test outcomes in rare diseases. Eight plain language genomic test report templates were developed. These reports were piloted and evaluat..
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Grants
Awarded by State Government of Victoria
Funding Acknowledgements
The authors thank the participants for their involvement; the advisory group members involved in family report template co-design; Magdalena McGuire for plain language expertise; Kim Boycott for sharing a custom plain language genomic result summary clinical tool; Gabriel Recchia et al. for sharing their survey tool; Melissa Martyn and Rigan Tytherleigh for their guidance in statistical analyses. The Acute Care Genomics Project is funded by the Australian Government's Medical Research Future Fund as part of grant GHFM76747 and a Royal Children's Hospital Foundation grant (2020-1259). The authors are funded by Australian Genomics, the Melbourne Genomics Health Alliance, the State Government of Victoria (Department of Health and Human Services) and the Australian Government's Medical Research Future Fund. Australian Genomics is funded by the National Health and Medical Research Council (Grants GNT1113531 and GNT2000001). The research conducted at the Murdoch Children's Research Institute was supported by the Victorian Government's Operational Infrastructure Support Program.