Racial and ethnic identification and quality of care: an Australian perspective

Kelaher, Margaret; Parry, Amy; Day, Susan; Paradies, Yin; Anderson, Ian

doi:10.5694/mja11.10844

Cited by 6 publications

(5 citation statements)

References 5 publications

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“…Fundamental to these questions is the ability to identify Indigenous people accurately and reliably in administrative health data. This is important not only in terms of health monitoring but also to facilitate access to health care entitlements targeting Indigenous people in order to improve Indigenous health outcomes [12]. …”

Section: Introductionmentioning

confidence: 99%

The quality of Indigenous identification in administrative health data in Australia: insights from studies using data linkage

Thompson

Woods

Katzenellenbogen

2012

BMC Med Inform Decis Mak

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BackgroundMissing or incorrect Indigenous status in health records hinders monitoring of Indigenous health indicators. Linkage of administrative data has been used to improve the ascertainment of Indigenous status. Data linkage was pioneered in Western Australia (WA) and is now being used in other Australian states. This systematic review appraises peer-reviewed Australian studies that used data linkage to elucidate the impact of under-ascertainment of Indigenous status on health indicators.MethodsA PubMed search identified eligible studies that used Australian linked data to interrogate Indigenous identification using more than one identifier and interrogated the impact of the different identifiers on estimation of Indigenous health indicators.ResultsEight papers were included, five from WA and three from New South Wales (NSW). The WA papers included a self-identified Indigenous community cohort and showed improved identification in hospital separation data after 2000. In CVD hospitalised patients (2000–05), under-identification was greater in urban residents, older people and socially more advantaged Indigenous people, with varying algorithms giving different estimates of under-count. Age-standardised myocardial infarction incidence rates (2000–2004) increased by about 10%-15% with improved identification. Under-ascertainment of Indigenous identification overestimated secular improvements in life expectancy and mortality whereas correcting infectious disease notifications resulted in lower Indigenous/ non-Indigenous rate ratios. NSW has a history of poor Indigenous identification in administrative data systems, but the NSW papers confirmed the usefulness of data linkage for improving Indigenous identification and the potential for very different estimates of Indigenous disease indicators depending upon the algorithm used for identification.ConclusionsUnder-identification of Indigenous status must be addressed in health analyses concerning Indigenous health differentials – they cannot be ignored or wished away. This problem can be substantially diminished through data linkage. Under-identification of Indigenous status impacts differently in different disease contexts, generally resulting in under-estimation of absolute and relative Indigenous health indicators, but may perversely overestimate Indigenous rates and differentials in the setting of stigma-associated conditions such as sexually-transmitted and blood-borne virus infections. Under-numeration in Census surveys also needs consideration to address the added problem of denominator undercounts.

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Section: Introductionmentioning

confidence: 99%

The quality of Indigenous identification in administrative health data in Australia: insights from studies using data linkage

Thompson

Woods

Katzenellenbogen

2012

BMC Med Inform Decis Mak

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“…We suggest that there is unmet need in provision of practical and specific cultural safety training for genetic practitioners, which would empower and equip them to provide high quality care in what is often a brief clinical relationship. It is critical to the provision of greater cultural support that Aboriginal and Torres Strait Islander people are identified in clinical genetic service data [40] and that the risks associated with identification (e.g. racism) are mitigated [41].…”

Section: Discussionmentioning

confidence: 99%

“This is my boy’s health! Talk straight to me!” perspectives on accessible and culturally safe care among Aboriginal and Torres Strait Islander patients of clinical genetics services

Dalach

Savarirayan

Baynam

et al. 2021

Int J Equity Health

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Background Aboriginal and Torres Strait Islander people do not enjoy equal access to specialist health services that adequately meet their needs. Clinical genetics services are at the vanguard of realising the health benefits of genomic medicine. As the field continues to expand in clinical utility and implementation, it is critical that Aboriginal and Torres Strait Islander people are able to participate and benefit equally to avoid further widening of the existing health gap. This is the first study to explore barriers to accessing clinical genetics services among Aboriginal and Torres Strait Islander people, which has been acknowledged as a key strategic priority in Australian genomic health policy. Methods A participatory design process engaged a majority-Aboriginal Project Reference Group and Aboriginal End-User Group. 63 semi-structured interviews were conducted with Aboriginal and/or Torres Strait Islander people who had accessed the government-funded clinical genetics service in Western Australia, Queensland or the Northern Territory between 2014 and 2018. The sample included patients, parents and carers. Participants were asked to recount their ‘patient journey’, from referral through to post-appointment and reflect on their perceptions of genetics and its implications for the health of themselves and their families. Analysis tracked chronological service engagement, followed by an inductive thematic approach. Results Barriers to access and engagement were present at each stage of the patient journey. These included challenges in obtaining a referral, long waiting periods, limited genetic literacy, absence of Aboriginal support services, communication challenges and lack of adequate psychosocial support and follow-up after attendance. Participants’ overall experiences of attending a genetic health service were varied, with positive perceptions tied closely to a diagnosis being achieved. The experience of (and expectation for) recognition of cultural identity and provision of culturally safe care was low among participants. Unaddressed concerns continued to cause significant distress in some people years after their appointment took place. Conclusions There is significant scope for improving the care provided to Aboriginal and Torres Strait Islander people at clinical genetics services. Immediate attention to minimising logistical barriers, developing relationships with Aboriginal Community Controlled Health Services and providing practical and specific cultural safety training for practitioners is required at the service-level. Our findings strongly support the development of guidelines or policies recognising the collective cultural needs of Aboriginal and Torres Strait Islander people in relation to genomic health care.

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“…Recognising Aboriginal Community Controlled Health services as a key point of contact with the health system for many Aboriginal and Torres Strait Islander people, and as a rich source of knowledge about the community they service, is also critical to improving continuity of care of patients with complex conditions and engaging new patients who stand to bene t. It should be noted that assessing the impact of any changes requires that Aboriginal and Torres Strait Islander people are identi ed in health data (36) and that the risks associated with identi cation (e.g. racism) are mitigated (37).…”

Section: Discussionmentioning

confidence: 99%

“This is My Boy’s Health! Talk Straight to Me!” Perspectives on Accessible and Culturally Safe Care Among Aboriginal and Torres Strait Islander Patients of Clinical Genetics Services

Dalach

Savarirayan

Baynam

et al. 2020

Preprint

Self Cite

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BackgroundAboriginal and Torres Strait Islander people do not enjoy equal access to specialist health services that adequately meet their needs. Clinical genetics services are at the vanguard of realising the health benefits of genomic medicine. As the field continues to expand in clinical utility and implementation it is critical that Aboriginal and Torres Strait Islander people are able to participate and benefit equally to avoid further widening of the existing health gap. This is the first study to explore barriers to accessing clinical genetics services among Aboriginal and Torres Strait Islander people, which has been acknowledged as a key strategic priority in Australian genomic health policy.MethodsA participatory design process engaged a majority-Aboriginal Project Reference Group and Aboriginal End-User Group. 63 semi-structured interviews were conducted with Aboriginal and/or Torres Strait Islander people who had accessed the government-funded clinical genetics service in Western Australia, Queensland or the Northern Territory between 2014-2018. The sample included patients, parents and carers. Participants were asked to recount their ‘patient journey’, from referral through to post-appointment and reflect on their perceptions of genetics and its implications for the health of themselves and their families. Analysis tracked chronological service engagement, followed by an inductive thematic approach. ResultsBarriers to access and engagement were present at each stage of the patient journey. These included challenges in obtaining a referral, long waiting periods, limited genetic literacy, absence of Aboriginal support services, communication challenges and lack of adequate psychosocial support and follow-up after attendance. Participants’ overall experiences of attending a genetic health service were varied, with positive perceptions tied closely to a diagnosis being achieved. The experience of (and expectation for) recognition of cultural identity and provision of culturally safe care was low among participants. Unaddressed concerns continued to cause significant distress in some people years after their appointment took place.ConclusionsThere is significant scope for improving the care provided to Aboriginal and Torres Strait Islander people at clinical genetics services. Immediate attention to minimising logistical barriers, developing relationships with Aboriginal Community Controlled Health Services and providing practical and specific cultural safety training for practitioners is required at the service-level. Our findings strongly support the development of guidelines or policies recognising the collective cultural needs of Aboriginal and Torres Strait Islander people in relation to genomic health care.

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Racial and ethnic identification and quality of care: an Australian perspective

Cited by 6 publications

References 5 publications

The quality of Indigenous identification in administrative health data in Australia: insights from studies using data linkage

The quality of Indigenous identification in administrative health data in Australia: insights from studies using data linkage

“This is my boy’s health! Talk straight to me!” perspectives on accessible and culturally safe care among Aboriginal and Torres Strait Islander patients of clinical genetics services

“This is My Boy’s Health! Talk Straight to Me!” Perspectives on Accessible and Culturally Safe Care Among Aboriginal and Torres Strait Islander Patients of Clinical Genetics Services

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