Inclusion in participatory research: what were the whitefellas doing in an Aboriginal health project?

Health research in indigenous communities, like many interactions between such communities and white-dominated institutions, has a chequered history leading to a three-fold decrement: suspicion and resistance to research that is seen as coming from outside of the community; a shortage of research generators and leaders within the community; and cumulative gaps in the research evidence base, both in terms of coverage of topics and in terms of meeting the priorities of the community.

Additionally, these decrements have been mistakenly located as problems being caused from within the community, rather than recognising that these are outcomes of wider contextual, historical and institutional factors and failings. Good research, as culturally appropriate, inclusive of community voices and meeting the needs and priorities of the community, is necessary in an increasingly evidence-based-practice culture within policy and health settings. Culturally safe research with and for indigenous communities has the potential to be empowering, and to bring community voices, views and experiences into the influential realm of'evidence.

This process of developing safe, appropriate and inclusive research is not straightforward: the decrements are recursive, with a shortage of connections between the community, its priorities and research. However, as the Healing Stories project that we discuss here has shown, it is possible to develop culturally safe participatory research by working with Elders from within the community and with leaders from within white institutions, in a spirit of reconciliation. The methods and findings of Healing Stories have been reported elsewhere, with an emphasis on the voices from the community; this chapter explores some of the 'behind the scenes' processes, from the perspective of the white researchers working from within white- dominated institutions.

After briefly describing the Healing Stories project, this chapter reflects on three parts of the participatory research process: getting started, leading together, and working together. The first of these considers laying the foundations for participatory research, working with Elders and leaders, and planning for inclusion, examining participatory research as a recognisable research design, with potential for rigour, cultural safety and inclusion. The second explores developing participatory methods, working with communities, and opportunities and choices for inclusion. The third examines the process of being participatory, working together and engaging in inclusion across the long-term commitment to the project.

The Centre of Clinical Research Excellence in Aboriginal Health : an operational rationale and some reflections on progress so far

The Centre of Clinical Research Excellence (CCRE) in Aboriginal and Torres Strait Islander Health was established in late 2003 through a major National Health and Medical Research Council (NHMRC) grant involving collaboration between the Aboriginal Health Council of South Australia (AHCSA), Flinders University, and Aboriginal Health Services. Our foundation research communities are the Aboriginal communities served by these Aboriginal Health Services in the Spencer Gulf / Eyre Peninsula region. In recent years a number of collaborative research programs involving chronic illness management, self-management and coordinated care have been implemented in these communities and this work is the basis of the initial CCRE activities. Key objectives of the CCRE are to improve the health status of Indigenous people through conducting relevant and meaningful Aboriginal controlled health research, providing formal training for Indigenous health researchers and developing innovative approaches to health care that can be readily translated and applied to support communities. The inclusion, empowerment and engagement of Indigenous people in the process of managing community health represent tangible strategies for achieving more equitable health outcomes for Aboriginal people. This paper outlines the CCRE operational rationale and presents early activities and outcomes across the three strategic areas of CCRE operations: research, education and training, and translation. Some critical reflections are offered on the progress and experience of the CCRE thus far. A common obstacle this CCRE has encountered is that the limited (especially staff) resources available to the Aboriginal Health Services with which we are collaborating make it difficult for them to engage with and progress the projects we are pursuing.

Global priority setting for Cochrane systematic reviews of health promotion and public health research

Background: Systematic reviews of health promotion and public health interventions are increasingly being conducted to assist public policy decision making. Many intra-country initiatives have been established to conduct systematic reviews in their relevant public health areas. The Cochrane Collaboration, an international organisation established to conduct and publish systematic reviews of healthcare interventions, is committed to high quality reviews that are regularly updated, published electronically, and meeting the needs of the consumers.

Aims: To identify global priorities for Cochrane systematic reviews of public health topics.

Methods: Systematic reviews of public health interventions were identified and mapped against global health risks. Global health organisations were engaged and nominated policy-urgent titles, evidence based selection criteria were applied to set priorities.

Results: 26 priority systematic review titles were identified, addressing interventions such as community building activities, pre-natal and early infancy psychosocial outcomes, and improving the nutrition status of refugee and displaced populations.

Discussion: The 26 priority titles provide an opportunity for potential reviewers and indeed, the Cochrane Collaboration as a whole, to address the previously unmet needs of global health policy and research agencies.

Are the potential benefits of a community-based participatory approach to public health research worth the potential cost?

Much of public health research is conducted in a community setting or is designed to target particular population groups. Community-based participatory research (CBPR) is gaining recognition as good practice in studies of this type(Flicker et al 2007). Its merit is based on the inclusion of the community as active participants at all stages of the research process (Goodman 2006). The focus on justice and equity in this approach is seen to contribute to a range of additional potential research benefits including increased relevance and sustainability of interventions arising from the research ( Blumenthal 2004; Wallestein 2006) However, it is widely acknowledged that adoption of a consciously CBPR approach requires additional expertise. time and resources from researchers and from communities (Tanjasiri et al 2002; Massaro & Claiborne 2001; Israel et al 1998). Adoption of CBPR is also limited by existing infrastructures which are supportive of more· traditional models of research. Changes to professional development programs, funding guidelines and criteria. grant review processes and ethics requirements are needed to support increased application of this approach (Israel et al 2001). As all research resources are limited, the potential additional benefits offered by CBPR over and above a more traditional research approach need to be weighed against the potential additional costs involved. Changes to research infrastructure are unlikely to occur until the costs and
benefits of a consciously CBPR approach as compared to a more traditional research approach can be demonstrated.

This is an exploratory paper that summarises the arguments put forward to date in relation to CBPR. A research case study and an evaluation framework are then used for a conceptual analysis of differences in the potential costs and benefits of the two approaches. Firstly, the paper describes the differences between traditional and consciously CBPR approaches. The reported benefits of CBPR are then outlined, followed by a discussion of the potential costs. Finally, the potential costs are compared to the potential benefits of using a CBPR approach, using a case study of existing research.

Nutrition and mental health research in Australia and New Zealand: A review of progress and directions for the future

This review summarises nutrition and mental health research in Australia and New Zealand between 1986 and 2006. The method used to identify papers for inclusion was a search of computerised databases: Medline, Cinahl and Meditext 1986–2006, with subsequent bibliographical review. Key search words were nutrition, diet, mental disorder, mental illness, weight, physical health, Australia and New Zealand. Inclusion criteria included: English language, original data in peer reviewed journals, and examination of some component of nutrition in people with a mental illness. The review of thirteen papers found that the evidence base for dietetic practice in mental health has developed through small assessment and interventional research, often with multidisciplinary collaboration. Future research should include quality and outcome measures with intersectoral partnerships. Dietitians are well positioned to lead and participate in mental health research and to implement research findings to improve the nutritional status of this vulnerable group.

Robustness in health research : do differences in health measures, techniques, and time frame matter?

Survey-based health research is in a boom phase following an increased amount of health spending in OECD countries and the interest in ageing. A general characteristic of survey-based health research is its diversity. Different studies are based on different health questions in different datasets; they use different statistical techniques; they differ in whether they approach health from an ordinal or cardinal perspective; and they differ in whether they measure short-term or long-term effects. The question in this paper is simple: do these differences matter for the findings? We investigate the effects of life-style choices (drinking, smoking, exercise) and income on six measures of health in the US Health and Retirement Study (HRS) between 1992 and 2002: (1) self-assessed general health status, (2) problems with undertaking daily tasks and chores, (3) mental health indicators, (4) BMI, (5) the presence of serious long-term health conditions, and (6) mortality. We compare ordinal models with cardinal models; we compare models with fixed effects to models without fixed-effects; and we compare short-term effects to long-term effects. We find considerable variation in the impact of different determinants on our chosen health outcome measures; we find that it matters whether ordinality or cardinality is assumed; we find substantial differences between estimates that account for fixed effects versus those that do not; and we find that short-run and long-run effects differ greatly. All this implies that health is an even more complicated notion than hitherto thought, defying generalizations from one measure to the others or one methodology to another.