Burden of the Beast

The dichotomy of commissioning Indigenous health and wellbeing program evaluations: What the Funder wants vs what the Community needs.

IntroductionConducting ethical and high-quality health research is crucial for informing public health policy and service delivery to reduce the high and inequitable burden of disease experienced by Aboriginal and Torres...

Deadly declines and diversity – understanding the variations in regional Aboriginal and Torres Strait Islander smoking prevalence

In Australia, Aboriginal Community Controlled Health Organisations (ACCHOs) are geographically proximal to where Aboriginal and Torres Strait Islander People reside and are valued for providing holistic and culturally safe primary health care. Partnering with ACCHOs in research is appropriate for redressing health inequities experienced by Aboriginal and Torres Strait Islander People, which includes a high burden of chronic disease. Historically, some approaches to Aboriginal and Torres Strait Islander health research have been unethical. Greater accountability in the research process, transparency in reporting, and use of culturally appropriate research methodologies are key recommendations to improving the ethical integrity of research. The need for strengthening the reporting of health research involving Aboriginal and Torres Strait Islander People and Indigenous peoples globally led to the development of the CONSolIDated critERia for strengthening the reporting of health research involving Indigenous peoples (CONSIDER statement), which is a synthesis of international ethical guidelines. This project report uses the CONSIDER statement to critically reflect on participatory research undertaken in partnership with an ACCHO in the rural context and to identify lessons of value for future research. By using the CONSIDER statement as a tool for critical reflection, it was identified that processes used to establish a research partnership with an ACCHO were key to setting the research agenda, including identifying ethical issues, the needs of local Aboriginal and Torres Strait Islander People, and expectations from the research. The participation of Aboriginal community members throughout the entire research process was not only methodologically important but was also ethically appropriate. Research activities in this project included opportunities for Aboriginal community members to directly share their perspectives and experiences and develop local solutions to issues affecting them. Outcomes included evidence to support future funding applications, community-derived priorities that assisted with government reporting, and locally identified methods for addressing chronic disease management. Key to this was building the research capacity and capability of local Aboriginal community members, which also reflected the ethical principles of reciprocity and equity. This also provided opportunities for non-Indigenous researchers to learn from local Aboriginal community members and develop skills in culturally appropriate research. Using the CONSIDER statement was beneficial in enabling researchers to critically reflect on a participatory research project undertaken in partnership with a rural ACCHO. Researchers identified that participatory approaches can be used to generate research of relevance to local Aboriginal community members and their ACCHOs, and to support health service reporting, and future funding applications. Research timelines and activities needed to be flexible and adaptable, to allow for staff turnover and unforeseen events of cultural significance. Similarly, it is important for researchers to be receptive to change and open to learning. Although research partnerships are established on trust and mutual respect, it is recommended that greater formal provisions are required to protect the intellectual property of Aboriginal and Torres Strait Islander communities involved in research. These lessons are likely to be transferrable to other settings and are of value to researchers seeking to partner with ACCHOs in research.

Conspiracy

This article describes the use and effectiveness of the participatory action research (PAR) framework to better understand community members' perceptions and risks of pandemic influenza. In 2009, the H1N1 influenza pandemic affected Indigenous populations more than non-Indigenous populations in Oceania and the Americas. Higher prevalence of comorbidities (diabetes, obesity, asthma and chronic obstructive pulmonary disease) as well as pregnancy in Indigenous communities may have contributed to the higher risks of severe disease. Social disparity, institutionalised racism within health services and differences in access to culturally safe health services have also been reported as contributors to disadvantage and delayed appropriate treatment. Given these factors and the subsequent impact they had on Australian Aboriginal and Torres Strait Islander communities, the authors set out to ensure that the Australian national, state and territory pandemic plans adequately reflected the risk status of Aboriginal and Torres Strait Islander peoples and promoted meaningful engagement with communities to mitigate this risk. A national study explored the views of Aboriginal and Torres Strait Islander people and their experiences with H1N1 and used a qualitative PAR framework that was effective in gaining deep understandings from participants. Aboriginal and Torres Strait Islander community-controlled organisations and health services were involved in the implementation, interpretation and monitoring of this project. As a result, important features of the implementation of this PAR framework with Aboriginal and Torres Strait Islander communities and organisations emerged. These features included the importance of working in a multidisciplinary team with Aboriginal and Torres Strait Islander researchers; the complexities and importance of obtaining multi-site human research ethics approval processes; the importance and value of building the research capacity of both experienced and novice researchers in PAR; the need to use localised sampling protocols; and the process of undertaking a collective research process and enacting action research and feedback. The most effective responses of this project were embedded in pre-existing relationships with individuals within organisations that had been established over a long period of time between Aboriginal medical services and investigators; however, research relationships established specifically for the purposes of the project were less successful because of changes in personnel and organisational support. The participatory approach used in this study has the potential to be applied to vulnerable populations in other countries.

Co-Designing Change

Diabetes care is still failing Aboriginal Australian people

78.2 Impact of Climate Change on the Health and Well-Being of Indigenous Communities in Australia

The novel coronavirus 2019 pandemic has brought about an overabundance of misinformation concerning the virus (SARS-CoV-2) and the coronavirus disease 2019 (COVID-19) it causes spreading rapidly on social media. While some more obviously untrustworthy sources may be easier for social media filters to identify and remove, an early feature was the cobranding of COVID-19 misinformation with other types of misinformation. To examine this, the top 10 Instagram posts (in English) were collected every day for 10 days (April 21-30th, 2020) for each of the hashtags #hoax, #governmentlies, and #plandemic. The #hoax was selected first as it is commonly used in conspiracy theory posts, and #governmentlies because it was the most commonly cotagged with #hoax. For comparison, we selected #plandemic as the most popular cotagged hashtag that was clearly COVID-19-related. This resulted in 300 Instagram posts available for our analysis. We conducted a content analysis by coding the themes contained in the posts, both for the images and the text caption shared by the Instagram users (including hashtags). The broad theme of general mistrust was the most common, including the idea that the government and/or media has fabricated or hidden information pertaining to COVID-19. Conspiracy theories were the second-most frequent theme among posts. Overall, COVID-19 was frequently presented in association with authority-questioning beliefs. Developing an understanding of how the public shares misinformation on COVID-19 alongside conspiracy theories and authority-questioning statements can aid public health officials and policymakers in limiting the spread of potentially life-threatening health misinformation.

SummaryMost research involving Aboriginal and Torres Strait Islander peoples has been conducted by non-Indigenous people and has not been a positive experience for many Aboriginal and Torres Strait Islander communities. This scoping review maps approaches to health research involving Aboriginal and Torres Strait Islander peoples and communities in Australia from the last two decades. A literature search found 198 papers, of which 34 studies met the inclusion criteria. The Aboriginal and Torres Strait Islander Quality Appraisal Tool was then used to map the quality of the reported community driven research. The Quality Appraisal Tool privileges, Aboriginal and Torres Strait Islander people’s epistemologies and ethical research governance. The findings reported on strengths and identified areas for improvement in reporting community driven research.

Sharing the challenge of cancer control for Indigenous Australians: a national agenda.

BackgroundAboriginal and Torres Strait Islander peoples are disproportionately impacted by type 2 diabetes. Continuous glucose monitoring (CGM) technology (such as Abbott Freestyle Libre 2, previously referred to as Flash Glucose Monitoring) offers real-time glucose monitoring that is convenient and easy to use compared to self-monitoring of blood glucose (SMBG). However, this technology’s use is neither widespread nor subsidised for Aboriginal and Torres Strait Islander peoples with type 2 diabetes. Building on existing collaborations with a national network of Aboriginal and Torres Strait Islander communities, this randomised controlled trial aims to assess the effect of CGM compared to SMBG on (i) haemoglobin A1c (HbA1c), (ii) achieving blood glucose targets, (iii) reducing hypoglycaemic episodes and (iv) cost-effective healthcare in an Aboriginal and Torres Strait Islander people health setting.MethodsThis is a non-masked, parallel-group, two-arm, individually randomised, controlled trial (ACTRN12621000753853). Aboriginal and Torres Strait Islander adults with type 2 diabetes on injectable therapy and HbA1c ≥ 7.5% (n = 350) will be randomised (1:1) to CGM or SMBG for 6 months. The primary outcome is change in HbA1c level from baseline to 6 months. Secondary outcomes include (i) CGM-derived metrics, (ii) frequency of hypoglycaemic episodes, (iii) health-related quality of life and (iv) incremental cost per quality-adjusted life year gained associated with the CGM compared to SMBG. Clinical trial sites include Aboriginal Community Controlled Organisations, Aboriginal Medical Services, primary care centres and tertiary hospitals across urban, rural, regional and remote Australia.DiscussionThe trial will assess the effect of CGM compared to SMBG on HbA1c for Aboriginal and Torres Strait Islander people with type 2 diabetes in Australia. This trial could have long-term benefits in improving diabetes management and providing evidence for funding of CGM in this population.Trial registrationAustralian and New Zealand Clinical Trials Registry ACTRN12621000753853. Registered on 15th June 2021.

Building evidence about effective health promotion in Aboriginal and Torres Strait Islander communities.

‘More than a Thought Bubble…’