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A dynamic systems view of clinical genomics: a rich picture of the landscape in Australia using a complexity science lens

BACKGROUND: Clinical genomics represents a paradigm shifting change to health service delivery and practice across many conditions and life-stages. Introducing this complex technology into an already complex health system is a significant challenge that cannot be managed in a reductionist way. To bu...

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Autores principales: Long, Janet C., Gul, Hossai, McPherson, Elise, Best, Stephanie, Augustsson, Hanna, Churruca, Kate, Ellis, Louise A., Braithwaite, Jeffrey
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7912922/
https://www.ncbi.nlm.nih.gov/pubmed/33639930
http://dx.doi.org/10.1186/s12920-021-00910-5
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author Long, Janet C.
Gul, Hossai
McPherson, Elise
Best, Stephanie
Augustsson, Hanna
Churruca, Kate
Ellis, Louise A.
Braithwaite, Jeffrey
author_facet Long, Janet C.
Gul, Hossai
McPherson, Elise
Best, Stephanie
Augustsson, Hanna
Churruca, Kate
Ellis, Louise A.
Braithwaite, Jeffrey
author_sort Long, Janet C.
collection PubMed
description BACKGROUND: Clinical genomics represents a paradigm shifting change to health service delivery and practice across many conditions and life-stages. Introducing this complex technology into an already complex health system is a significant challenge that cannot be managed in a reductionist way. To build robust and sustainable, high quality delivery systems we need to step back and view the interconnected landscape of policymakers, funders, managers, multidisciplinary teams of clinicians, patients and their families, and health care, research, education, and philanthropic institutions as a dynamic whole. This study holistically mapped the landscape of clinical genomics within Australia by developing a complex graphic: a rich picture. Using complex systems theory, we then identified key features, challenges and leverage points of implementing clinical genomics. METHODS: We used a multi-stage, exploratory, qualitative approach. We extracted data from grey literature, empirical literature, and data collected by the Australian Genomic Health Alliance. Nine key informants working in clinical genomics critiqued early drafts of the picture, and validated the final version. RESULTS: The final graphic depicts 24 stakeholder groups relevant to implementation of genomics into Australia. Clinical genomics lies at the intersection of four nested systems, with interplay between government, professional bodies and patient advocacy groups. Barriers and uncertainties are also shown. Analysis using complexity theory showed far-reaching interdependencies around funding, and identified unintended consequences. CONCLUSION: The rich picture of the clinical genomic landscape in Australia is the first to show key stakeholders, agencies and processes and their interdependencies. Participants who critiqued our results were instantly intrigued and engaged by the graphics, searching for their place in the whole and often commenting on insights they gained from seeing the influences and impacts of other stakeholder groups on their own work. Funding patterns showed unintended consequences of increased burdens for clinicians and inequity of access for patients. Showing the system as a dynamic whole is the only way to understand key drivers and barriers to largescale interventions. Trial Registration: Not applicable SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12920-021-00910-5.
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spelling pubmed-79129222021-03-02 A dynamic systems view of clinical genomics: a rich picture of the landscape in Australia using a complexity science lens Long, Janet C. Gul, Hossai McPherson, Elise Best, Stephanie Augustsson, Hanna Churruca, Kate Ellis, Louise A. Braithwaite, Jeffrey BMC Med Genomics Research Article BACKGROUND: Clinical genomics represents a paradigm shifting change to health service delivery and practice across many conditions and life-stages. Introducing this complex technology into an already complex health system is a significant challenge that cannot be managed in a reductionist way. To build robust and sustainable, high quality delivery systems we need to step back and view the interconnected landscape of policymakers, funders, managers, multidisciplinary teams of clinicians, patients and their families, and health care, research, education, and philanthropic institutions as a dynamic whole. This study holistically mapped the landscape of clinical genomics within Australia by developing a complex graphic: a rich picture. Using complex systems theory, we then identified key features, challenges and leverage points of implementing clinical genomics. METHODS: We used a multi-stage, exploratory, qualitative approach. We extracted data from grey literature, empirical literature, and data collected by the Australian Genomic Health Alliance. Nine key informants working in clinical genomics critiqued early drafts of the picture, and validated the final version. RESULTS: The final graphic depicts 24 stakeholder groups relevant to implementation of genomics into Australia. Clinical genomics lies at the intersection of four nested systems, with interplay between government, professional bodies and patient advocacy groups. Barriers and uncertainties are also shown. Analysis using complexity theory showed far-reaching interdependencies around funding, and identified unintended consequences. CONCLUSION: The rich picture of the clinical genomic landscape in Australia is the first to show key stakeholders, agencies and processes and their interdependencies. Participants who critiqued our results were instantly intrigued and engaged by the graphics, searching for their place in the whole and often commenting on insights they gained from seeing the influences and impacts of other stakeholder groups on their own work. Funding patterns showed unintended consequences of increased burdens for clinicians and inequity of access for patients. Showing the system as a dynamic whole is the only way to understand key drivers and barriers to largescale interventions. Trial Registration: Not applicable SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12920-021-00910-5. BioMed Central 2021-02-27 /pmc/articles/PMC7912922/ /pubmed/33639930 http://dx.doi.org/10.1186/s12920-021-00910-5 Text en © The Author(s) 2021 Open AccessThis 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 licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence 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 licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Research Article
Long, Janet C.
Gul, Hossai
McPherson, Elise
Best, Stephanie
Augustsson, Hanna
Churruca, Kate
Ellis, Louise A.
Braithwaite, Jeffrey
A dynamic systems view of clinical genomics: a rich picture of the landscape in Australia using a complexity science lens
title A dynamic systems view of clinical genomics: a rich picture of the landscape in Australia using a complexity science lens
title_full A dynamic systems view of clinical genomics: a rich picture of the landscape in Australia using a complexity science lens
title_fullStr A dynamic systems view of clinical genomics: a rich picture of the landscape in Australia using a complexity science lens
title_full_unstemmed A dynamic systems view of clinical genomics: a rich picture of the landscape in Australia using a complexity science lens
title_short A dynamic systems view of clinical genomics: a rich picture of the landscape in Australia using a complexity science lens
title_sort dynamic systems view of clinical genomics: a rich picture of the landscape in australia using a complexity science lens
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7912922/
https://www.ncbi.nlm.nih.gov/pubmed/33639930
http://dx.doi.org/10.1186/s12920-021-00910-5
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