Engaging with Indigenous Australian Communities for a Human Papilloma Virus and Oropharyngeal Cancer Project; Use of the CONSIDER Statement

"The Australian Human Rights Commission defines self-determination of Indigenous Australians as an ongoing process of choice to ensure Indigenous communities are able to meet their social, cultural and economic needs....Part of this self-determination is the choice to be involved, in truly bi-partisan partnerships, in health-related research that is driven by community aspirations and recognised need."

There is generally low uptake by Indigenous persons of vaccinations, including the human papillomavirus (HPV) vaccine. This paper outlines the engagement, consultation, and recruitment strategies for a study involving investigation of HPV and HPV-related oropharyngeal squamous cell carcinoma (OPSCC) among Indigenous South Australians, based on the Consolidated Criteria for Strengthening Reporting of Health Research involving Indigenous Peoples (CONSIDER) statement.

Guided by 7 national and international statements and guidelines about Indigenous health research, the CONSIDER statement is a checklist comprising 8 domains (which, in turn, comprise 17 criteria). The domains are: (1) governance, (2) relationships, (3) prioritisation, (4) methodologies, (5) participation, (6) capacity, (7) analysis and findings, and (8) dissemination. CONSIDER is one of various guiding principles stipulating that Indigenous communities need to be engaged in all aspects of research undertaken in their communities and organisations and that they are to be regarded as equal partners in the process. Groups that have created and endorsed such principles also stress the need for researchers to embrace the shared values of Indigenous peoples and their communities, including their diversity, priorities, needs, and aspirations. Adhering to such principles as those articulated in CONSIDER is particularly important when researching sensitive topics such as the sexually transmitted HPV.

A number of processes were implemented to ensure that the study, from conception to recruitment, embraced principles that helped facilitate the building of reciprocal and respectful relationships between the Indigenous stakeholders and the researchers. These are outlined in the paper and illustrated in a schema. In brief, initial consultations with interested Aboriginal Community Controlled Health Organisations (ACCHOs) were carried out throughout 2014 and 2015. The broad topic related to the increasing evidence of associations between HPV and OPSCC, the high prevalence of both in the Indigenous Australian population, and the fact that community understanding of the HPV-OPSCC association was limited. When asked if part of the community consultation might involve forums around the role of HPV vaccination in potentially reducing throat cancer risk, the view was that explanation of how HPV infection was connected with the mouth (through oral sex) could be awkward/embarrassing for Indigenous community members. The general consensus was that this aspect would be best covered by non-Indigenous staff.

This resulted in the submission of a funding application that included nine Indigenous investigators and that reflected Indigenous community views and inputs in study design and methodology. Once funding was received, community consultation was again undertaken, with 6 ACCHOs providing structures, strategies, and recommendations for how recruitment for participants taking part in the study should be undertaken. Six staff members were hired, with the 3 non-Indigenous staff undertaking cultural competency training. An Indigenous Reference Group (IRG) was established to provide oversight and cultural guidance. Recruitment of Indigenous participants by trained field officers occurred between February and December 2018, with 1,011 people recruited. Qualitative records summarising research staff contact with ACCHOs and participants were documented. These records, together with field trip notes, ACCHO stakeholder reflections, and research staff comments, were reviewed to summarise the culturally sensitive strategies that appeared to work well to facilitate ACCHO and participant buy-in.

As reported here, one positive outcome of participants' involvement in the research is that many started to see themselves as active agents for change in their community. One quotation included in the paper is illustrative: "It's interesting how participants have embraced a new informed knowledge relating to the Human Papilloma Virus. Some participants have spoken of how they will now go and visit their doctor....Others have said that they will let their family members know of this virus and ensure children in their family or Community attend school to have the vaccinations." Perhaps part of this sense of empowerment came from the fact that the researchers/project embraced novel suggestions by the ACCHOs, participants, Indigenous research assistants, and the IRG with regard to ways of communicating study-related information, including using humour and keeping messages context-specific.

Findings were documented against the CONSIDER statement's research reporting framework of governance (the 8 domains delineated above). For example, related to "(7) analysis and findings" and "(8) dissemination": Key Indigenous stakeholders and Indigenous researchers contributed as co-authors in publications, enabling Indigenous values and perspectives to contribute to interpretation of the study findings, which were then presented at international conferences by the Indigenous project manager and 2 ACCHO staff members. The apparent success of the community engagement processes were then conceptualised into 5 domains: (1) engaging with ACCHOs as equal partners very early in the research process; (2) having an IRG; (3) ACCHOs actively promoting the study; (4) having a flexible agenda responsive to broader environment demands; and (5) including Indigenous capacity building.

The researchers point out that administrators of funding grants and research institutions usually operate within tight fiscal parameters, meaning that extended timelines and the costs associated with community engagement need to be factored into the initial grant application. "Not having the resources or time to adequately consult with community ultimately means the outcomes are compromised and possibly not reflective of a true partnership (or of what the Indigenous communities were seeking in terms of health benefits/knowledge)."

In conclusion, "The use of such a tool [the CONSIDER statement] helps increase research accountability, with adherence to the criteria ultimately strengthening the research process that will hopefully lead to positive and productive impacts on future health policy and translational outcomes. Specific lessons learned from this study that may be of value for other communities, and indeed potentially make the results generalizable, include the need for active and wide community consultation that is initiated very early in the research process, strong and sustained capacity building and an active and engaged Indigenous Reference Group. Results of this study can be disseminated through feedback to the Indigenous communities involved, presentations by the Indigenous research officers at both national and international conferences and involvement in all forms of media."