Janet C Long1,2, Hossai Gul3,4, Elise McPherson3, Stephanie Best3,4,5, Hanna Augustsson3,6, Kate Churruca3, Louise A Ellis3, Jeffrey Braithwaite3,4. 1. Australian Institute of Health Innovation, Macquarie University, Sydney, Australia. janet.long@mq.edu.au. 2. Australian Genomics, Murdoch Children's Research Institute, Melbourne, Australia. janet.long@mq.edu.au. 3. Australian Institute of Health Innovation, Macquarie University, Sydney, Australia. 4. Australian Genomics, Murdoch Children's Research Institute, Melbourne, Australia. 5. Murdoch Children's Research Institute, Melbourne, Australia. 6. Medical Management Centre, Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Solna, Sweden.
Abstract
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.
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.
Entities:
Keywords:
Complexity; Health services research; Implementation; Sustainability
Authors: J A Anderson; M S Meyn; C Shuman; R Zlotnik Shaul; L E Mantella; M J Szego; S Bowdin; N Monfared; R Z Hayeems Journal: J Med Ethics Date: 2016-11-25 Impact factor: 2.903
Authors: Ellen Otten; Erwin Birnie; Adelita V Ranchor; J Peter van Tintelen; Irene M van Langen Journal: Eur J Hum Genet Date: 2015-02-04 Impact factor: 4.246