Learning from scaling up ultra-rapid genomic testing for critically ill children to a national level

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dc.contributor.authorBest, S.
dc.contributor.authorBrown, H.
dc.contributor.authorLunke, S.
dc.contributor.authorPatel, C.
dc.contributor.authorPinner, J.
dc.contributor.authorBarnett, C.P.
dc.contributor.authorWilson, M.
dc.contributor.authorSandaradura, S.A.
dc.contributor.authorMcClaren, B.
dc.contributor.authorBrett, G.R.
dc.contributor.authorBraithwaite, J.
dc.contributor.authorStark, Z.
dc.date.issued2021
dc.description.abstractIn scaling up an ultra-rapid genomics program, we used implementation science principles to design and investigate influences on implementation and identify strategies required for sustainable "real-world" services. Interviews with key professionals revealed the importance of networks and relationship building, leadership, culture, and the relative advantage afforded by ultra-rapid genomics in the care of critically ill children. Although clinical geneticists focused on intervention characteristics and the fit with patient-centered care, intensivists emphasized the importance of access to knowledge, in particular from clinical geneticists. The relative advantage of ultra-rapid genomics and trust in consistent and transparent delivery were significant in creating engagement at initial implementation, with appropriate resourcing highlighted as important for longer term sustainability of implementation. Our findings demonstrate where common approaches can be used and, significantly, where there is a need to tailor support by professional role and implementation phase, to maximize the potential of ultra-rapid genomic testing to improve patient care.
dc.description.statementofresponsibilityStephanie Best, Helen Brown, Sebastian Lunke, Chirag Patel, Jason Pinner, Christopher P. Barnett, Meredith Wilson, Sarah A. Sandaradura, Belinda McClaren, Gemma R. Brett, Jeffrey Braithwaite and Zornitza Stark
dc.identifier.citationnpj Genomic Medicine, 2021; 6(1):5-1-5-9
dc.identifier.doi10.1038/s41525-020-00168-3
dc.identifier.issn2056-7944
dc.identifier.issn2056-7944
dc.identifier.orcidBarnett, C.P. [0000-0003-1717-3824]
dc.identifier.urihttps://hdl.handle.net/2440/133741
dc.language.isoen
dc.publisherSpringer Nature
dc.relation.granthttp://purl.org/au-research/grants/nhmrc/GNT111353
dc.rights© The Author(s) 2021. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/.
dc.source.urihttps://doi.org/10.1038/s41525-020-00168-3
dc.titleLearning from scaling up ultra-rapid genomic testing for critically ill children to a national level
dc.typeJournal article
pubs.publication-statusPublished

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