Measuring what counts in Aboriginal and Torres Strait Islander care: a review of general practice datasets available for assessing chronic disease care
Liam McBride Kelly
A , Deborah Wong B * and Andrea Timothy C
A
B
C
Abstract
Large datasets exist in Australia that make de-identified primary healthcare data extracted from clinical information systems available for research use. This study reviews these datasets for their capacity to provide insight into chronic disease care for Aboriginal and Torres Strait Islander peoples, and the extent to which the principles of Indigenous Data Sovereignty are reflected in data collection and governance arrangements.
Datasets were included if they collect primary healthcare clinical information system data, collect data nationally, and capture Aboriginal and Torres Strait Islander peoples. We searched PubMed and the public Internet for data providers meeting the inclusion criteria. We developed a framework to assess data providers across domains, including representativeness, usability, data quality, adherence with Indigenous Data Sovereignty and their capacity to provide insights into chronic disease. Datasets were assessed against the framework based on email interviews and publicly available information.
We identified seven datasets. Only two datasets reported on chronic disease, collected data nationally and captured a substantial number of Aboriginal and Torres Strait Islander patients. No dataset was identified that captured a significant number of both mainstream general practice clinics and Aboriginal Community Controlled Health Organisations.
It is critical that more accurate, comprehensive and culturally meaningful Aboriginal and Torres Strait Islander healthcare data are collected. These improvements must be guided by the principles of Indigenous Data Sovereignty and Governance. Validated and appropriate chronic disease indicators for Aboriginal and Torres Strait Islander peoples must be developed, including indicators of social and cultural determinants of health.
Keywords: Aboriginal and Torres Strait Islander health, big data, chronic disease, clinical information system, electronic medical record, general practice, Indigenous Data Sovereignty, Indigenous health, primary health care.
References
Australian Bureau of Statistics (2019) National Aboriginal and Torres Strait Islander Health Survey, Australia, 2018–19. (Australian Bureau of Statistics: Canberra, ACT, Australia) Available at https://www.abs.gov.au/statistics/people/aboriginal-and-torres-strait-islander-peoples/national-aboriginal-and-torres-strait-islander-health-survey/2018-19 [Verified 7 September 2023]
Australian Bureau of Statistics (2022) Patient experiences, 2021-22 financial year. (Australian Bureau of Statistics: Canberra, ACT, Australia) Available at https://www.abs.gov.au/statistics/health/health-services/patient-experiences/latest-release [Verified 7 September 2023]
Australian Indigenous HealthInfoNet (2024) Overview of Aboriginal and Torres Strait Islander health status. (Australian Indigenous HealthInfoNet: Perth, WA, Australia) Available at https://healthinfonet.ecu.edu.au/learn/health-facts/overview-aboriginal-torres-strait-islander-health-status [Verified 1 June 2024]
Australian Institute of Health and Welfare (2010) National best practice guidelines for collecting Indigenous status in health data sets. (Australian Institute of Health and Welfare: Canberra, ACT, Australia) Available at https://www.aihw.gov.au/reports/indigenous-australians/national-guidelines-collecting-health-data-sets/summary [Verified 7 September 2023]
Australian Institute of Health and Welfare (2018) Australia’s Health 2018. (Australian Institute of Health and Welfare: Canberra, ACT, Australia) Available at https://www.aihw.gov.au/getmedia/7c42913d-295f-4bc9-9c24-4e44eff4a04a/aihw-aus-221.pdf.aspx?inline=true [Verified 7 September 2023]
Australian Institute of Health and Welfare (2020) Review of the two national Indigenous specific primary health care datasets: the Online Services Report and the National Key Performance Indicators. (Australian Institute of Health and Welfare: Canberra, ACT, Australia) Available at https://nla.gov.au/nla.obj-2497074289/view [Verified 7 September 2023]
Australian Institute of Health and Welfare (2022) Australian Burden of Disease Study: impact and causes of illness and death in Aboriginal and Torres Strait Islander people 2018. (Australian Institute of Health and Welfare: Canberra, ACT, Australia) Available at https://www.aihw.gov.au/reports/burden-of-disease/illness-death-indigenous-2018/summary [Verified 7 September 2023]
Briffa TG, Sanfilippo FM, Hobbs MST, Ridout SC, Katzenellenbogen JM, Thompson PL, Thompson SC (2010) Under-ascertainment of Aboriginality in records of cardiovascular disease in hospital morbidity and mortality data in Western Australia: a record linkage study. BMC Medical Research Methodology 10, 111.
| Crossref | Google Scholar | PubMed |
Canadian Institute for Health Information (2017) CIHI’s information quality framework. (Canadian Institute for Health Information: Ottawa, ON Canada) Available at https://www.cihi.ca/sites/default/files/document/iqf-summary-july-26-2017-en-web_0.pdf [Verified 7 September 2023]
Canaway R, Boyle D, Manski-Nankervis J-A, Gray K (2022) Identifying primary care datasets and perspectives on their secondary use: a survey of Australian data users and custodians. BMC Medical Informatics and Decision Making 22, 94.
| Crossref | Google Scholar | PubMed |
Davis S, Reeve C, Humphreys J (2015) How good are routinely collected primary healthcare data for evaluating the effectiveness of health service provision in a remote Aboriginal community? Rural and Remote Health 15, 2804.
| Crossref | Google Scholar | PubMed |
Department of Social Services (2020) A decade of data: findings from the first 10 years of footprints in time. (Department of Social Services: Canberra, ACT, Australia) Available at https://www.dss.gov.au/sites/default/files/documents/05_2021/19667-dss-footprints-time.pdf [Verified 1 June 2024]
Doran C, Potts B, Langham E, Begg S, Bryant J, Hardie-Boys N, Bainbridge R (2020) Evaluation of the Australian Government’s Investment in Aboriginal and Torres Strait Islander Primary Health Care through the Indigenous Australians’ Health Programme: quantitative data feasibility assessment. (Allen and Clarke Consulting: Melbourne, Vic, Australia) Available at https://web.archive.org/web/20220709170213/https://www.iahpyarnes.com/wp-content/uploads/2018/03/IAHP-Yarnes-DFA-Report_Final_18Jun2020.pdf [Verified 7 September 2023]
German RR, Lee LM, Horan JM, Milstein RL, Pertowski CA, Waller MN (2001) Updated guidelines for evaluating public health surveillance systems. (Centers for Disease Control and Prevention: Atlanta, GA, USA) Available at https://www.cdc.gov/mmwr/preview/mmwrhtml/rr5013a1.htm [Verified 7 September 2023]
Hripcsak G, Duke JD, Shah NH, Reich CG, Huser V, Schuemie MJ, Suchard MA, Park RW, Wong ICK, Rijnbeek PR, van der Lei J, Pratt N, Noren GN, Li YC, Stang PE, Madigan D, Ryan PB (2015) Observational Health Data Sciences and Informatics (OHDSI): opportunities for observational researchers. In ‘MEDINFO 2015: eHealth-enabled Health’. (Eds IN Sarkar, A Georgiou, P Mazzoncini de Azevedo Marques) pp. 574–578. (IOS Press: Amsterdam, Netherlands)
Jones R, Thurber KA, Chapman J, D’Este C, Dunbar T, Wenitong M, Eades SJ, Strelein L, Davey M, Du W, Olsen A, Smylie JK, Banks E, Lovett R, Mayi Kuwayu Study Team (2018) Study protocol: Our Cultures Count, the Mayi Kuwayu Study, a national longitudinal study of Aboriginal and Torres Strait Islander wellbeing. BMJ Open 8, e023861.
| Crossref | Google Scholar | PubMed |
Maiam nayri Wingara Indigenous Data Sovereignty Collective, Australian Indigenous Governance Institute (2018) Indigenous Data Sovereignty Communique. (Maiam nayri Wingara Indigenous Data Sovereignty Collective) Available at https://www.maiamnayriwingara.org/s/Communique-Indigenous-Data-Sovereignty-Summit-x5rk.pdf [Verified 7 September 2023]
Maiam nayri Wingara Indigenous Data Sovereignty Collective, Australian Indigenous Governance Institute, Lowitja Institute (2023) Indigenous Data Governance Communique. (Maiam nayri Wingara Indigenous Data Sovereignty Collective) Available at https://www.maiamnayriwingara.org/s/Indigenous-Data-Governance-Communique-2023.pdf [Verified 7 September 2023]
McBride Kelly L, Timothy A, Wong D, Paige E, Douglas K, Agostino J (2021) A review of general practice datasets available for assessing coverage of chronic disease risk assessment and management for Aboriginal and Torres Strait Islander peoples. Report to the Australian Government Department of Health. National Centre for Epidemiology and Population Health, Canberra, ACT Australia.
Productivity Commission (2017) Data availability and use: overview & recommendations. (Productivity Commission: Canberra, ACT, Australia) Available at https://www.pc.gov.au/inquiries/completed/data-access/report/data-access-overview.pdf [Verified 7 September 2023]
Renehan C (2018) Indigenous Data Sovereignty Summit. (Tribal Wave Regional Alliance Mid North New South Wales: Port Macquarie, NSW, Australia) Available at https://web.archive.org/web/20200311004154/https://tribalwave.org.au/wp-content/uploads/2019/08/TWA_Aboriginal_DataSovereinty_RPT_Jul18.pdf [Verified 7 September 2023]
Royal Australian College of General Practitioners (2020) Resources to support health checks for Aboriginal and Torres Strait Islander people. (Royal Australian College of General Practitioners: Melbourne, Vic, Australia) Available at https://www.racgp.org.au/the-racgp/faculties/atsi/guides/2019-mbs-item-715-health-check-templates [Verified 7 September 2023]
The Centre of Research Excellence in Aboriginal Chronic Disease Knowledge Translation and Exchange (2020) Aboriginal Community Controlled Health Organisations in practice: sharing ways of working from the ACCHO sector. (South Australian Health and Medical Research Institute: Adelaide, SA, Australia) Available at https://sahmri.blob.core.windows.net/communications/ACCHO_Interactive_Resource2020.pdf [Verified 7 September 2023]
Thompson SC, Woods JA, Katzenellenbogen JM (2012) The quality of Indigenous identification in administrative health data in Australia: insights from studies using data linkage. BMC Medical Informatics and Decision Making 12, 133.
| Crossref | Google Scholar | PubMed |
Youens D, Moorin R, Harrison A, Varhol R, Robinson S, Brooks C, Boyd J (2020) Using general practice clinical information system data for research: the case in Australia. International Journal of Population Data Science 5(1), 1099.
| Crossref | Google Scholar | PubMed |
