Significant disparities in cancer outcomes exist between Indigenous and non-Indigenous peoples in Australia, New Zealand, Canada and the USA. Indigenous peoples in these countries experience disproportionately high mortality rates for a number of cancers, including breast [New Zealand (New Zealand Ministry of Health 2005), USA (Goggins & Wong 2007)], cervix [Australia (Cunningham et al. 2008), New Zealand (New Zealand Ministry of Health 2005), Canada (Marrett et al. 2004)], gallbladder [Canada (Marrett et al. 2004)], lip and oropharynx [Australia (Cunningham et al. 2008)], liver [Australia (Cunningham et al. 2008), New Zealand (New Zealand Ministry of Health 2005)], lung [Australia (Cunningham et al. 2008), New Zealand (New Zealand Ministry of Health 2005), USA (Goggins & Wong 2007)], prostate [New Zealand (New Zealand Ministry of Health 2005), USA (Goggins & Wong 2007)] and stomach [New Zealand (New Zealand Ministry of Health 2005), USA (Lanier et al. 2006)]. Attempts to greatly reduce these disparities have so far proven unsuccessful. One reason for this may be a lack of willingness on the part of Indigenous peoples to engage with mainstream health services (Morgan et al. 1997), as well as a distrust (Holmes et al. 2002) and rejection (Humphery 2001) of western research programmes, some of which have been harmful to various Indigenous groups.
Historically, Aboriginal and Torres Strait Islander people have often been treated as the ‘passive subjects’ of research (Holmes et al. 2002). However, governments, policy makers and concerned community members have increasingly advocated for a paradigm shift, whereby issues are prioritised by the communities concerned and research results are translated into health policy and practice (Viswanathan et al. 2004). In Australia, the National Health and Medical Research Council (NHMRC) has highlighted the necessity of ‘community involvement in the development, conduct and communication of the research’[The Aboriginal and Torres Strait Islander Research Agenda Working Group (RAWG) of the NHMRC 2004], with consideration for the interests of Aboriginal and Torres Strait Islander people involved.
A growing number of researchers claim to incorporate new research models that achieve these goals through active community engagement in the research process. Community engagement, which is a crucial component within a range of related research paradigms (e.g. community-based participatory research, participatory action research and collaborative community action research), involves a close liaison between the researcher and the community in which the research will occur. ‘Community’ here refers to a ‘socially-constructed unit of identity’ (Israel et al. 1998). In the context of community-based research, decisions and responsibilities are shared by researchers, community organisations (e.g. community health services or tribal councils) and members, with results disseminated to all partners (Israel et al. 2005) and benefits to the involved communities (Strickland 2006). Ideally, there is a balance between action and research with the aim of reducing health disparities (Minkler & Wallerstein 2008).
Community engagement aims to create the possibility for a range of benefits, both to the communities involved and to the relevance of the research. Projects that engage the community hold the potential to provide communities with additional resources (Altman 1995), such as funding from research grants to support health initiatives, and the creation of new employment positions for community members. Other benefits include the potential to examine and reduce marginalisation, to increase community capacity through involving community partners in the identification of health priorities and solutions and to provide training and health education (Israel et al. 1998). There is an inevitable degree of subjectivity in the designation of outcomes as ‘benefits’, and evaluation of community benefits is likely to be more relevant if involvement of community partners enables due account to be taken of their values and priorities. For researchers, community engagement can provide the opportunity to develop theories incorporating the ‘lived experience’ of those involved (Israel et al. 1998). Oliver et al. (2004) have suggested that the inclusion of consumers in research can serve to remove barriers to participation, improve the profile of research and improve the uptake of research findings.
The theoretical and potential practical benefits of community-based studies among Indigenous populations appear significant, but there remains little research on the quality and effectiveness of Indigenous cancer studies that engage the community as part of research and programme evaluation. A 2010 review of cancer control among Aboriginal and Torres Strait Islander peoples recommended a review of factors behind the success or failure of community-based studies (Miller et al. 2010). The extent of community involvement in Indigenous projects is often limited, with community members tending to be included in some aspects (e.g. focus group participation) but not others (e.g. data analysis) (Teufel-Shone et al. 2006; Daley et al. 2010), and some health researchers express anxiety about the possibility of tokenism overshadowing genuine consumer engagement (Ward et al. 2009). Even where researchers are intent on involving Indigenous communities in projects, insufficient funding (Shahid et al. 2009a) and short deadlines (Burhansstipanov et al. 2005) can render this a difficult goal to achieve. Green et al. (1995) have outlined criteria for the evaluation of participatory research according to the degree of community engagement, the potential of research to empower the community and the extent of benefits to community members. The present review aims to assess studies that use a community engagement approach to address cancer among Indigenous populations, with an emphasis on: (1) the extent of community involvement, ownership, benefit and empowerment that has been facilitated; and (2) the overall effectiveness of each programme, with the aim of examining relationships between the design and implementation of research programmes and their effectiveness.