Primary care and hospital/secondary care data for First Nations pregnancies are not connected. When a pregnant woman needs primary and secondary care, the information about her care is not shared between the two. This can cause difficulties with the care she receives and makes it hard to research to improve the quality of care for First Nations women, their babies and families. The main objective is to create a digital system that connects primary and secondary healthcare information and uses advanced technology to help First Nations-led care models be developed and used in clinical practice in the Birth in Our Community (BiOC) program. Different approaches will be used for this project- 1) Figure out what information is collected about First Nations pregnancies in the BiOC program, in primary care (ATSICHS/IUIH) and secondary care (Mater). Note that no patient data is accessed in this step; 2) Undertake community engagement research to inform the approach to consent required to share and access data for clinical care and research purposes; 3) Create secure data streams that can work with each other and be used on a large scale; 4) Community directed data and analytics; and 5) First Nations-led new models of care.

MRFF 2021 Research Data Infrastructure scheme

$3 Million

January 2024- May 2026.

Chief Investigator

Professor Clair Sullivan, Director, Queensland Digital Health Centre, The University of Queensland. Associate Professor of Clinical Informatics, Centre for Health Services Research, School of Medicine, The University of Queensland. Director of Clinical Informatics (research), Digital Metro North, Metro North Hospital and Health Service. Adjunct Professor, Faculty of Health, Queensland University of Technology. Consultant Endocrinologist, Royal Brisbane and Women’s Hospital, Queensland Department of Health. clair.sullivan@health.qld.gov.au

Investigators

Professor Jason Ferris, Biostatistician, Director of Research and Statistical Support
Centre for Health Services Research, Faculty of Medicine, The University of Queensland j.ferris@uq.edu.au
Dr Natasha Reid, Research Fellow & Director UQ Neurodevelopmental Clinic, The University of Queensland n.reid1@uq.edu.au
Professor Sailesh Kumar, Professor and Head of the Mayne Academy of Obstetrics & Gynaecology, The University of Queensland sailesh.kumar@mater.uq.edu.au
Dr Dominique Gorse, Director, Data Scientist, QCIF Data Science d.gorse@qcif.edu.au
Professor Steven McPhail, Director, Australian Centre for Health Services Innovation, Queensland University of Technology steven.mcphail@qut.edu.au
Dr Michael Lawley, Group Leader and Senior Principal Research Scientist, CSIRO Australian e-Health Research Centre michael.lawley@csiro.au
Professor James Ward, Director, Poche Centre for Indigenous Health, The University of Queensland james.ward@uq.edu.a
Associate Professor Guido Zuccon, Associate Professor, Information Technology and Electrical Engineering, ARC DECRA Fellow (2018-2020), Affiliate Associate Professor, UQ Centre for Health Services Research, Faculty of Medicine, Visiting Principal Scientist at Queensland Health g.zuccon@uq.edu.au
Associate Professor Carmel Nelson, Clinical Director, Institute for Urban Indigenous Health carmel.nelson@iuih.org.au
Dr Lyle Turner, Manager – Data and Research Unit, Institute for Urban Indigenous Health lyle.turner@iuih.org.a
Ms Kristie Watego, Manager, Birthing and Early Childhood Services, Institute for Urban Indigenous Health kristie.watego@iuih.org.au
Ms Jayne Barclay, Executive Director, Digital Innovation and Chief Information Officer jayne.barclay@eyeandear.org.au

Poche Centre for Indigenous Health, The University of Queensland,

Institute for Urban Indigenous Health

The Commonwealth Scientific and Industrial Research Organisation (CSIRO)

Queensland Cyber Infrastructure Foundation

Mater Hospital

Queensland University of Technology

Engstrom T, Lobo EH, Watego K, Nelson C, Wang J, Wong H, Kim SL, Oh SI, Lawley M, Gorse AD, Ward J, Sullivan C. Indigenous data governance approaches applied in research using routinely collected health data: a scoping review. NPJ Digit Med. 2024 Mar 15;7(1):68. doi: 10.1038/s41746-024-01070-3. PMID: 38491156; PMCID: PMC10943072.

Project Lead, CI A - Professor Clair Sullivan clair.sullivan@health.qld.gov.au

Nicole McDonald – DIFFERENCE Project Manager nicole.mcdonald@uq.edu.au

An Australian first trial of an anti-racism intervention at a major public hospital: acceptability, feasibility, and outcomes development.