Engaging with Indigenous Australian communities for a human papilloma virus and oropharyngeal cancer project; use of the CONSIDER statement

Abstract

Background: The prevalence of oral HPV infection and HPV-related oropharyngeal squamous cell carcinoma (OPSCC) among Indigenous Australians is unknown. This paper outlines the engagement, consultation and recruitment strategies for a study involving investigation of HPV and OPSCC among Indigenous South Australians, based on the consolidated criteria for strengthening the reporting of health research involving Indigenous Peoples (CONSIDER) statement. Methods: Initial consultations with all interested Aboriginal Community Controlled Health Organisations (ACCHOs) were done throughout 2014 and 2015. This resulted in a funding application submitted that reflected Indigenous community views and inputs in study design and methodology, and which included nine Indigenous investigators. Once funding was received, community consultation was again undertaken, with six ACCHOs providing structures, strategies and recommendations for how recruitment for participants taking part in the study should be undertaken. Staff were hired (n = 6), with non-Indigenous staff (n = 3) undertaking extensive cultural competency training. An Indigenous Reference Group was established to provide oversight and cultural guidance. Recruitment of Indigenous participants by trained field officers occurred between Feb 2018 and Dec 2018, with n = 1011 recruited. Qualitative records summarising research staff contact with ACCHOs and participants were documented. These records, together with field trip notes, key ACCHO stakeholder reflections and research staff comments, were reviewed to summarise the culturally sensitive strategies that appeared to work most successfully to facilitate ACCHO and participant buy-in.

‘There’s a Wall There—And That Wall Is Higher from Our Side’: Drawing on Qualitative Interviews to Improve Indigenous Australians’ Experiences of Dental Health Services

“…The IRG provides oversight and cultural guidance on all aspects of the study, including recruitment strategies and data collection. The study team is led by a senior Indigenous research officer (JH), who has published more specific details of the Indigenous engagement processes implemented in the study [ 17 ].…”

Appraising community driven health research with Aboriginal and Torres Strait Islander communities: a scoping review using the Aboriginal and Torres Strait Islander Quality Appraisal Tool

“…Consultation required the ability to nurture environments where mutual trust, safety and reciprocal learning could be fostered ( Turner et al , 2019 ; Hedges et al , 2020 ). How this aligns with and complements national research funding guidelines remains in question.…”

Laying the foundations of community engagement in Aboriginal health research: establishing a community reference group and terms of reference in a novel research field

“…Involving stakeholders in research leads to research outcomes of greater quality and clinical relevance due to their being able to contribute unique perspectives and experiential expertise to the expertise of researchers [14][15][16][17]. This collaborative approach between non-Aboriginal researchers and Aboriginal researchers, services and communities is fundamental to informing, guiding and influencing how Aboriginal health care is designed and delivered and has the potential to help address persistent health disparities between Aboriginal and non-Aboriginal people [10,[18][19][20].…”

“…One approach used to incorporate the key elements of community engagement and involve Aboriginal people in Aboriginal health research is to engage a community reference group to provide oversight, input and cultural guidance to research projects [5,20]. Community reference groups formalize the academic-community partnership by providing a mechanism which emphasizes information and power-sharing, mutual respect and reciprocity between community members and researchers [5,21].…”