Browsing by Author "Griffiths K."
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Item A framework for operationalising Aboriginal and Torres Strait Islander data sovereignty in Australia: results of a systematic literature review of published studies.(2022-03-01) Trudgett S.; Griffiths K.; Farnbach S.; Shakeshaft A.Background: Racial health disparities are only likely to be meaningfully improved by tailoring public health and clinical interventions to the specific needs of Indigenous people and their communities. Accurate tailoring relies on the availability of high-quality Indigenous-specific data. The potential benefits of increased availability of Indigenous data need to be balanced by efforts to ensure those data are collected and used appropriately. This paper identifies characteristics of Indigenous Data Sovereignty (IDS) principles and considers a framework for operationalisation. Method(s): A PRISMA compliant search of the literature was undertaken, using methods detailed in the Cochrane Collaboration Handbook on Systematic Reviews of Health Promotion and Public Health Interventions (1). The search strategy comprised two steps: a search of 11 scientific electronic databases and five grey literature sources. The search was limited by date of publication (1 January 2000 to 1 December 2021). The following keywords and subject heading terms were used: (exp Aboriginal and Torres Strait Islander or Aborigin* or Torres Strait Island* or, Oceanic ancestry group) and (exp research or biomedical research or population surveillance or translational medical research or, research design) and (exp data or datasets or data collection or data management or health surveys or information dissemination or, intellectual property) and (exp self-determination or ownership or control or access or possession or OCAP or sovereignty or, ethics) and, (exp Australia). IDS principles: (i) ownership; (ii) control; (iii) accessibility; (iv) custodianship; (v) accountability to Indigenous people; (vi) amplify Community voice; (vii) relevant and reciprocal; and (viii) sustainably self-determining. Using standard data extraction forms, we examined relevant Australian studies to identify key characteristics and frequency with which they cited IDS principles. These findings were consolidated into an operationalisation framework. Finding(s): 34 relevant Australian published studies were identified. The most frequently cited IDS principles were Accountability to Aboriginal and Torres Strait Islander peoples and sustainably self-determining. The least frequently cited principle was Access. A framework to operationalise IDS principles is proposed that is both standardised internationally and able to be tailored to the diverse contexts of Indigenous peoples. Interpretation(s): IDS is emergent in Australia and there is a clear need to establish an agreed set of International IDS principles and a framework for their operationalisation and contextualisation across diverse Indigenous communities and contexts. Funding(s): This research project is funded through an Australian Research Council (ARC) Discovery Grant from 2017 to 2022. The National Drug and Alcohol Research Centre (NDARC) is funded by the Australian Government Department of Health. The 1st author (ST) is supported by a scholarship co-funded by NDARC and the Lowitja Institute.Copyright © 2022 The Author(s)Item Measuring health care experiences that matter to Indigenous people in Australia with cancer: identifying critical gaps in existing tools.(2021-04-22) Green M.; Cunningham J.; Anderson K.; Griffiths K.; Garvey G.Background: Measurement of patients' healthcare experiences is increasingly used as an indicator of quality of care, but there are concerns that existing measures omit information that is meaningful to patients and that results may not be used systematically to inform service improvement. Further, current approaches may be inadequate for some population groups, such as Indigenous people in Australia, whose healthcare experience is impacted by the context of colonisation and discordance between Indigenous understandings of health and the Western biomedical health system. This study aimed to assess the extent to which existing patient experience measures used in Australia collect information about critical aspects of cancer care, as previously identified by Indigenous people affected by cancer and their health care providers. Method(s): A two-stage process was used to examine the adequacy of existing patient experience measures for Indigenous people in Australia: (1) relevant tools and measures were identified and assessed, and four measures selected as suitable comparators; (2) comparators were examined in detail and mapped against topics identified in earlier research as important to Indigenous people with cancer. Gaps in topic coverage in comparators were identified. Result(s): No comparators completely captured the critical aspects of cancer care identified by Indigenous people affected by cancer and their health care providers. The number of topics 'partially' captured by the four comparators ranged from 4 to 7 out of 9. While most topics were partially covered, the lack of questions around culture and cultural safety was notable. Conclusion(s): Existing tools are likely to miss key aspects of Indigenous peoples' experiences of cancer care in Australia. Failure to adequately assess care experiences related to cultural safety may compromise efforts to improve health outcomes. Addressing gaps requires development of experience measures that are strengths-based, reflect an Indigenous worldview and measure aspects of experience relevant to Indigenous people.Copyright © 2021, The Author(s).