Principles Relevant to Health Research among Indigenous Communities

Abstract

Research within Indigenous communities has been criticised for lacking community engagement, for being exploitative, and for poorly explaining the processes of research. To address these concerns, and to ensure ‘best practice’, Jamieson, et al. (2012) recently published a summary of principles outlined by the NHMRC (2003) in “one short, accessible document”. Here we expand on Jamieson et al.’s paper, which while commendable, lacks emphasis on the contribution that communities themselves can make to the research process and how culturally appropriate engagement, can allow this contribution to be assured, specifically with respect to engagement with remote communities. Engagement started before the research proposal is put forward, and continued after the research is completed, has integrity. We emphasise the value of narratives, of understanding cultural and customary behaviours and leadership, the importance of cultural legitimacy, and of the need for time, not just to allow for delays, but to ensure genuine participatory engagement from all members of the community. We also challenge researchers to consider the outcomes of their research, on the basis that increasing clinical evidence does not always result in better outcomes for the community involved.

Understanding barriers to fruit and vegetable intake in the Australian Longitudinal Study of Indigenous Children: a mixed-methods approach

“…Rather than relying on quantitative epidemiological analyses on their own, we conducted a focus group as part of our research protocol to guide data interpretation ( 35 ) . This mixed-methods approach ( 36 ) facilitates a more holistic analysis, considering multiple perspectives and drawing on multiple ways of sharing knowledge ( 37 , 38 ) , and enhances the interpretation and contextualisation of findings ( 35 ) . Our approach was guided by Bronfenbrenner and Morris’ social ecological model ( 39 ) and a conceptual framework applied within the Pro Children project ( 40 , 41 ) .…”

Employing CBPR to investigate function, utility, and longevity of household filters to improve potable water quality for indigenous peoples at Lake Atitlán, Guatemala: a pilot study with San Pedro de La Laguna

“…Situated in the department of Sololá, San Pedro de Atitlán (Fig. 1) is bordered to the northwest by San Juan de la Laguna, to the northeast by the lake itself, to the southeast by Santiago de Atitlán, to the southwest by Chicacao (Suchitepequez) and situated at latitude 14°41 0 25 00 and longitude 91°16 0 21 00 , with a total area of 24 km 2 at 1610 m above sea level (Navichoc Sajquiy 2007). Historically, it has divided into four cantones, overlapping in only one location, Chuwasanayii', Pakucha', Chuwakante and Tzanjaay, and the people conserve the names despite the municipality forming five zones with assigned streets and housing (Navichoc Sajquiy 2007).…”

The National Strongyloides Working Group in Australia 10 workshops on: commendations and recommendations

“…There have been successful outcomes in a number of Indigenous communities that have been engaged in developing community‐based mechanisms to reduce S. stercoralis infections. Working group members have been involved in developing, in partnership with these communities, a number of approaches, including engagement strategies, 19 a clinical audit approach, 20,21 mass drug administration approaches, 22,23 infrastructure upgrades, and community‐based education programs 24 . The effectiveness of ivermectin in eliminating S. stercoralis from the body, and establishing a criterion for cure using Strongyloides serology, was demonstrated at Miwatj Health, an Indigenous health organisation in the Northern Territory 20 .…”

“…Each Aboriginal community or region needs a program to eliminate the disease devised and led by the community 19,29 . In other groups, a standardised process for identifying infected individuals, treating them, and monitoring for cure, is required.…”

“…Each Aboriginal community or region needs a program to eliminate the disease devised and led by the community. 19,29 In other groups, a standardised process for identifying infected individuals, treating them, and monitoring for cure, is required. Advocacy includes identifying opportunities to extend collaboration and joint approaches with other communities, groups and agencies fighting similar diseases, such as hookworm, where joint efforts could be more effective.…”