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“It puts a human face on the researched” – A qualitative evaluation of an Indigenous health research governance model

“It puts a human face on the researched” – A qualitative evaluation of an Indigenous health... research has grown in recent Objective: To describe the Inala Aboriginal and Torres Strait Islander Community Jury for Health Wdecades, its inglorious history Research, and evaluate its usefulness as a model of Indigenous research governance within has often left Indigenous Australians feeling 2-8 exploited. At worst, research acted as an an urban Indigenous primary health care service from the perspectives of jury members and overt tool of colonial control espousing and researchers. enacting racial pseudoscientific theory and, Methods: Informed by a phenomenological approach and using narrative inquiry, a focus at best, Aboriginal and Torres Strait Islander group was conducted with jury members and key informant interviews were undertaken with peoples, communities, aspirations and researchers who had presented to the Community Jury in its first year of operation. 9,10 realities were ignored. Little attention was Results: The jury was a site of identity work for researchers and jury members, providing an given to the need for Indigenous people to opportunity to observe and affirm community cultural protocols. Although researchers and own, drive and benefit from health research. jury members had differing levels of research literacy, the jury processes enabled respectful This agenda emerged more recently through communication and relationships to form, which positively influenced research practice, the introduction of national guidelines for community aspirations and clinical care. ethical research in Aboriginal and Torres Strait Discussion: The jury processes facilitated transformative research practice among researchers Islander health, which promote Indigenous and resulted in transference of power from researchers to the jury members, to the mutual community ownership, consent, control and benefit of both. engagement through principles of respect, Conclusion: Ethical Indigenous health research practice requires an engagement with reciprocity, responsibility, equality, survival Indigenous peoples and knowledge at the research governance level, not simply as subjects or and protection as well as spirit and integrity. objects of research. These guidelines provide encouragement for greater and more respectful inclusion Key words: ethics, community engagement, research governance, Aboriginal and Torres Strait of Indigenous people in research, although Islander peoples they can result in the procedural observance of rules or tokenistic gesturing to appease 12-15 appropriate Aboriginal organisation(s) is The Southern Queensland Centre of human research ethics committees. recommended, as is giving Indigenous Excellence in Aboriginal and Torres Strait The push towards meaningful engagement people the opportunity to contribute to Islander Primary Health Care (Centre of of Indigenous people and communities guiding and monitoring research. Non- Excellence) has grappled with many of in research has spawned an emerging Indigenous researchers identify the need the tensions articulated in the literature. literature describing more precisely how this for greater guidance around navigating Established as an Indigenous primary health 16-20 can be achieved. Despite this, defining community politics while concerns care service in Inala (an outer western suburb ‘community’ remains problematic. The diverse have been raised about conceptualising of Brisbane), the service provides primary and dispersed nature of urban Indigenous ‘community’ in these endeavours and the health care, specialist clinics, allied health communities may make consultation with assumed capacities of communities to and community engagement initiatives, ‘community’ challenging. Accessing a broad participate. but also has an expanding research program range of community members through 1. Oodgeroo Unit, Chancellery, Queensland University of Technology 2. Southern Queensland Centre of Excellence in Aboriginal and Torres Strait Islander Primary Health Care; School of Population Health, University of Queensland 3. Discipline of General Practice, School of Medicine, University of Queensland Correspondence to: Dr Chelsea Bond, Oodgeroo Unit, Chancellery, Queensland University of Technology, GPO Box 2434, Brisbane, QLD 4001; e-mail: chelsea.bond@qut.edu.au Submitted: November 2014; Revision requested: January 2015; Accepted: March 2015 This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made. The authors have stated the following conflict of interest: Co-authors Askew and Foley are employed by the Southern Queensland Centre of Excellence in Aboriginal and Torres Strait Islander Primary Health Care, which resources and coordinates the Inala Community Jury. The relationship between the researchers and the study has been acknowledged in the paper. Aust NZ J Public Health. 2016; 2016; 40 (Suppl. 1) S89-S95; doi: 10.1111/1753-6405.12422 Vol. 40 (Suppl. 1) 2016 Australian and New Zealand Journal of Public Health S89 © 2015 The Authors Bond, Foley and Askew 23-27 and profile. Despite being an ‘Indigenous’ approved by the jury, and although the jury were asked to recount their experiences health service, the Centre of Excellence process is supplementary to existing ethics of engagement with the jury, and the is government-run, thus intensifying the requirements, the local Human Research strengths and challenges of the model of imperative for a local Indigenous community Ethics Committee will not approve a project engagement in terms of how it influenced governance model for health research within that has not been approved by the jury. their practice. The Community Jury focus the community. The Centre of Excellence group explored jury members’ motivations Jury meetings are convened quarterly for established the Inala Community Jury for joining the jury and experiences of the between four and seven hours. Researchers for Aboriginal and Torres Strait Islander process, alongside challenges, strengths and are required to present directly to the jury Health Research in 2011 to ensure that the recommendations for the model. While there at these meetings with a one-page brief research undertaken by the service was were broad domains of inquiry, the research supported by an oral presentation and about in the community’s interests and that the instruments remained largely unstructured one hour for discussion. The researchers assessment of ‘community interest and to enable participants to tell stories that were explain, in lay terms, why the research is being benefit’ would be determined by the local meaningful for them. Support to undertake done, the methods being used, and how the Indigenous community. this study was provided by the Community research will benefit the community. Jury Jury, and ethical clearance was obtained from Conceptualisation and development of the members may question the researchers about the Metro South Human Research Ethics Community Jury was shaped by a process any aspect of the research to be confident Committee. called ‘Citizens’ Juries’ and/or ‘deliberative that the research will benefit the community 28,29 democracies’. While common in the US and that the burden of participation (if any) is Participants and data collection and UK, Citizens’ Juries have had limited warranted. Researchers return to the jury on applications within health research contexts completion of their research and report back Of the 12 researchers who had presented in Australia. Citizens’ Juries enable ‘lay’ their main findings with updates provided to the jury in its first year of operation, nine involvement in decision-making processes to each meeting in the interim. Researchers were invited to participate in this study to that directly affect them and usually involve may also engage with the jury for help represent a broad cross-section of researchers a randomly selected broad cross-section resolving specific aspects of the research, e.g. participating in the jury processes. The types of the community considering evidence recruitment strategies. If the jury supports a of research undertaken during this time from ‘experts’, much like a traditional jury. proposed research project, a letter of support included quantitative and qualitative, clinic Social justice is a central goal of citizens’ signed by the jury Chair is provided to the and community-based research in areas juries, in that non-specialist knowledge is researchers. If a research proposal is not as diverse as antenatal care, inhalant use, valued, particularly from citizens previously supported, the research cannot progress, nutrition, dietetic services, social prescribing excluded from participating in traditional however, researchers may return to the jury by GPs, and childhood developmental and 29 25-27,33 decision-making processes. It was this with a revised proposal for review. behavioural problems. During the goal that was most alluring to the Centre time of this study, the jury endorsed all of Excellence, given the historical and the research that was presented, but not Methods contemporary context of Indigenous necessarily at the first presentation or without engagement in and governance of health revision or amendment. No researchers This study aimed to evaluate the usefulness research. Given that citizenship is a relatively refused to participate. Six of the researchers of the Community Jury as a model of new concept for Indigenous Australians, the were also clinicians (based at the Centre of community governance and engagement Centre for Excellence elected to use the term Excellence or elsewhere) while the remaining from the perspectives of jury members and ‘Community Jury’ in lieu of ‘Citizens’ Jury’. This three were full-time researchers. Two of these researchers. This study did not aim to evaluate nomenclature was also endorsed by the jury researchers are co-authors (CB and DA), and the jury according to predetermined markers members at the inaugural jury meeting. one is Indigenous and a jury facilitator (CB). of success. Rather, the study is informed by Interviews were conducted by authors CB a phenomenological approach in which The Inala Community Jury Model and WF. “human perception, not external influences or objects in the material world … is at the The Community Jury of 14 Aboriginal and All jury members were invited to participate 30 (p.181) core of the analysis”. Thus the study Torres Strait Islander community members; in the focus group, which author WF elucidates the value of the jury model from representatives of the four local Indigenous conducted after a Community Jury meeting. the narrative accounts of those participating community-controlled organisations All members in attendance at the meeting in the process. and 10 members who were purposefully (n=12) elected to participate. All participants selected following a call for expressions of provided written consent prior to data interest to ensure a mix of ages, gender and Design collection. The focus group and the interviews both Aboriginal and Torres Strait Islander were audio-recorded with participant consent The study used narrative inquiry to explore members. Independently facilitated, jury and transcribed and de-identified prior to the impact of engagement between members are paid for their time and review analysis. researchers and community members as all research being undertaken by or with the they described their experiences of jury We acknowledge our multiple subject positions Centre of Excellence prior to its proposed participation. Narrative inquiry works with as both insiders and outsiders (as researchers, commencement and/or development. No “people’s consciously told stories, recognising Indigenous community member, employees research can be undertaken at or through that these build on deeper stories of which of the Centre of Excellence, jury participants the Centre of Excellence without being 31 (p.209) people are often unaware”. Researchers and jury facilitator). While there are benefits S90 Australian and New Zealand Journal of Public Health Vol. 40 (Suppl. 1) 2016 © 2015 The Authors Evaluation of Indigenous research governance model to our insider status in terms of “generating health research agenda, but nonetheless, I remember thinking at the time of the Community Jury, “this is actually quite contextually embedded knowledge that were complementary to that task. Both 34 (p.60) good”. Like, of course, “Who am I to think I emerges from experience” we consciously parties articulated experiences of strength, can just go in?” – Researcher, female allied sought to minimise bias in data collection benefit and usefulness that related to health professional and analysis. WF conducted the jury focus personal, collective, professional, cultural group because she did not have a role in and/or clinical practice. Incorporated in this Engaging in discussions with jury members, coordination or facilitation of the jury. Further, analysis are the first author’s reflections as a receiving guidance and eliciting support from researchers were interviewed by either WF or researcher, facilitator and local Indigenous a broad cross-section of the local Aboriginal CB, depending on which had had the least prior community member, and are presented here and Torres Strait Islander community contact with the researcher. Two researchers to highlight the intersecting nature of these represented on the jury increased researchers’ from within the Centre of Excellence research tasks. confidence in working in this space, and team were not invited to participate in this in the relevance and importance of their research to minimise the over-representation of Engagement as a site for identity work research. For the Indigenous researcher, the the internal research staff. [personal and community] jury provided a platform for her professional identity to be discernible within her own For both jury members and researchers, Analysis community. the Community Jury operated as a site for Authors CB and WF collaborated to organise important identity work in terms of both I’ve always felt living in this community the data according to the broad domains of personal and broader community identity. as a researcher, the essence of who I am inquiry in relation to the strengths, challenges professionally is really at the background The jury provided the opportunity to and recommendations for improving the jury because it doesn’t make sense to most have one’s identity affirmed, either as an people that I engage with socially. What model. All transcripts were coded together Indigenous person and/or as a researcher I like about the jury is it allows me to yarn using NVivo version 9. In analysing the data working in Aboriginal and Torres Strait with my own mob about the stuff that I love according to these themes, the research team Islander health research. For one jury doing ... I can ‘out’ myself as a researcher. – identified that there was little demarcation member, participating in the jury was Researcher and Indigenous community between ‘strengths’ and ‘challenges’ . an opportunity for greater Indigenous member The challenges of the model provided community contact, thus enabling a opportunities for learning and reflection, confirmation of his cultural identity and Jury members’ narratives also revealed the which were then recounted by research improvements in his overall wellness. In important community identity work that participants as strengths. Thus, further terms of his motivations for participation, this was undertaken through jury meetings. Jury analysis was undertaken within the research identity work appeared to have primacy over members spoke about jury participation as team to explore the key narratives that the health research agenda. an opportunity to ‘represent’ community emerged in terms of the usefulness of the interests, but also acknowledged the I joined because for years ... I wasn’t involved jury model as stated explicitly and implicitly in the Aboriginal movement ... And I said to obligation they felt to ‘respond’ to community within participants’ accounts. my wife, “I feel like I need that black contact” interests as a result of jury participation. because there was something missing in Despite our attempts to minimise bias in I talk to family about it and I talk to my life. And that [the Jury] kind of filled me data collection, we acknowledge that our work colleagues, working in Indigenous up, and I feel much happier for it now. Jury organisations … it depends on the topic. relationship to the research participants member – Aboriginal male elder So where I work if I’m dealing with young and the Community Jury may be seen as Indigenous women who have recently problematic. However, the relatedness of Other Jury members described how the fallen pregnant, I’ll say, “Oh, I’ve heard the researchers to the participants and the jury provided a mechanism for them to be there might be a program going on at research governance model enabled the ‘active’ within their community and perform the medical centre. Go and ask about this capturing of nuances in the narratives of their community duties. Meanwhile, for or that”. – Jury member, middle-aged both researchers and community members. researchers, the jury processes provided Aboriginal female During the analysis process, the findings were security in their own identity as researchers presented back to both jury members and Jury members readily identified the working in an Indigenous health context. researchers for member checking; of which all importance of representing the community’s This was particularly important as eight concurred with the results. strengths to visiting researchers. These efforts of the nine participating researchers were were witnessed in researcher accounts and non-Indigenous, and conscious they could reconfigured their pre-existing imaginings potentially subjugate Indigenous voices and Results of the community. A number of researchers aspirations through research. recounted stories of being approached by Researchers and Community Jury members’ So being new, coming in, as a non- jury members to clarify the findings from narratives told two different, but interrelated Aboriginal person and then thinking particular research projects so that they could ...”Oh God, they’re probably thinking who’s ‘stories’ of the usefulness of the Community spread the word within the community. For this non-Aboriginal person coming to do Jury as a model of Indigenous community example, an antenatal study revealed local research again?” So that was in my mind. governance of health research. The benefits women were taking iron supplements early And after the meeting and them being so that jury members and researchers derived lovely and accepting of me ... and feeling in pregnancy but not folate. A group of were not limited to the Centre of Excellence’s like they were approving my research ... senior women sought clarification on what goal of an Indigenous community-controlled Vol. 40 (Suppl. 1) 2016 Australian and New Zealand Journal of Public Health S91 © 2015 The Authors Bond, Foley and Askew advice they should be giving young mothers Jury members spoke of having to get communication and practice rather than a with regards to increasing folate intake pre- researchers to speak ‘their’ language and deficiency of the Indigenous community. conception and in early pregnancy. Being said they were quite comfortable asking A particularly interesting aspect of talk approached in this manner proved powerful researchers to adjust their terminology. acknowledged by jury members and for researchers, particularly among those who These manifestations of respect enabled a researchers was the use of story by jury were clinicians within the service, as their safe space for jury members to freely ask members. Jury members frequently primary encounters with Indigenous people questions of the researchers. Researchers responded to researchers and each other were with individuals who were sick and at were aware of differing levels in general through the recounting of stories. There were their most vulnerable, thus distorting the health and health research literacy, sad stories, amusing stories, and stories that imaginative possibilities of Aboriginality and particularly as the research team usually had been recounted more than once. At of the local community. needed to edit the one-page briefs prior times, the stories shared related specifically to submission to the jury to ensure their You can sometimes get a sense in the clinic to a jury member’s experience of the health accessibility for a ‘lay’ audience. Upon that the community is a bit disengaged and research issue, while other times, the stories don’t really want to do anything with their reflection, some researchers questioned shared revealed the broader historical, social, health. I’ve tried very hard to quell my own whether the lack of health research cultural and political context of Indigenous nihilism in those types of consultations but literacy of jury members was a barrier health. Jury members highly valued this it was a really positive injection of optimism to meaningful engagement. However, it method of transmitting knowledge. For and activism that this Jury gave me. And I seemed that this ‘barrier’ was also an enabler some jury members, witnessing stories were felt really energised and I think it really has to more meaningful understandings of the privileged opportunities, particularly those helped back in the clinic. – Researcher, community attitudes, values and knowledge between Elders and young people, serving male General Practitioner of a particular health issue. cultural identity work as described earlier. I would know that now going in, that I The opportunity to engage with local I personally love coming [to the jury would need to informalise my terminology community members as a collective meetings] and I know that our focus is the whereas I almost came expecting them to and cohesive group invested in health research and our new projects, but I love know what an [allied health professional] advancement, enabled researchers to rethink sitting here and I love hearing about the was… And actually speaking to them in their own imaginings of the ‘community stories. Everybody gives their own little the Jury meeting and asking questions identity’ and think critically about how these personal story about what they’re talking about “Well, hang on you want to do this about. I personally love hearing how it were enacted in research and clinical practice. research, but what do you do?” … And I was for Uncle and for Auntie when they Most researchers spoke of their surprise was like, “Oh hang on, I hadn’t even thought were growing up … you have more respect at appearing before a jury of community of that”…They don’t need to accept the and it makes you feel so grateful for what members who each appeared strong research but they have to accept what a we have today. – Jury member, young physically and culturally, individually and [health professional] is in this community… Aboriginal female collectively. The community identity work I found I wasn’t talking about the research, undertaken by the jury was transformative Here, the mechanics of health research it was talking about who I was and I think for researchers, with the local Indigenous ran secondary to learning, expressing and even where I was from before working community reconfigured from passive, ill, affirming community cultural protocols. The there, so it was a lot more than just the subjects of research to active, engaged and process of talking and learning through story research ... So always in the beginning of healthy citizens. was an unfamiliar experience for some of the my consultations now I ask them [patients] “ What do you understand about me researchers, particularly those who expected Learning to talk and learning being here for you as an [allied health ‘traditional’ ethics review procedures. Some through talk professional]?” – Researcher , female allied researchers expressed concern that jury health professional members might have gone off on a tangent The power of yarning was a key theme to and that discussions weren’t focused on the emerge in the narratives of researchers and The questions asked of researchers by the research questions. Interestingly, four of the the jury members. Experiencing respectful jury members was revealing for researchers researchers interviewed articulated how talk was important to jury members and was in ways that they hadn’t anticipated, but led jury member interactions influenced their witnessed when researchers acknowledged to enhanced practice. Researchers could research agenda, not through specifically country, showed signs of nervousness, and not hide behind shared understanding of articulated directives but rather as a result spoke to jury members in a way that they research language and practice, and instead of thinking deeply about the jury members’ could understand. Not being spoken ‘down to’ had to develop translational skills in health stories. In this context, Indigenous stories was the basis of respectful engagement and research terminology. Researchers also had to operated powerfully to convey a deeper empowering encounters. learn how to communicate their relatedness understanding of Indigenous experiences, to the proposed research. Jury members We’re not told, we’re not spoken down to; which influenced health research practice like it’s not a regimental thing or it’s a “we’re examined less the researcher’s methodology, despite the apparent lack of mastery of health above you, you black fellas in Inala, we and more the researcher’s identity, passion research language by jury members. know what’s best for you”. It’s not like that, and relationship to the work they were So the main thing I think in everything that it’s empowering us to empower ourselves. doing. The health research literacy gap thus – Jury member, young Aboriginal male I’ve been involved with here has been about became part of the task for better research moving knowledge – things that I knew but S92 Australian and New Zealand Journal of Public Health Vol. 40 (Suppl. 1) 2016 © 2015 The Authors Evaluation of Indigenous research governance model knew in my head, to thinking about what thought about the issues that they had health outcomes, and cohesive community that would actually feel ... around what raised. I felt very timid at that meeting … governance processes. does it mean to be an Aboriginal or Torres I didn’t know how that, that would have I think our confidence goes up a notch when Strait Islander person in Australia. What is gone down. But [local researcher] said that we are respected on what final outcomes life like for people? What is it like for some of went down really really really well, that she we come to and I think that’s very important the Elders who grew up, say, on a mission? could see from people’s reactions that they otherwise you go away disillusioned. We’re What would that actually mean? What were “Oh,[she] listened, she heard!” And kicking goals and these goals are going to would that actually be like? – Researcher, something I did notice after that is that be long-term. We’re leaving a legacy for female researcher one of the jury members started calling young people to follow. That’s how I feel me Dr Barb* at that meeting. What was as an Elder. – Jury member, Aboriginal interesting is that – the previous meeting male Elder An enabler of empowerment and where I was in the hole, that same jury accountability Jury members felt empowered as a result member was calling [local researcher] of respectful engagement with researchers The jury process enabled researchers Doctor and there was “Dr [name]” and and the health service and the respect given and jury members to explore and affirm there was Barbie* [me]. And that was an to the jury’s decisions. The respect that local community protocols and proved interesting experience as well, I mean I knew researchers had for the jury was evidenced empowering for both, albeit challenging at it. But it was an absolute, have it there in my in each of their accounts. The act of meeting times. For example, some researchers were face that, in this setting, [local researcher] face-to-face with community stakeholders to uncertain about local protocols, appropriate was the one with respect already. And I’m explain the research was new and daunting language use, and/or were unfamiliar still way – got a long way to go to really for most researchers. However, this model of with learning through story. However, gain that respect. – Researcher, female engagement was ultimately empowering, researcher [*pseudonym] the research team within the Centre of providing researchers with a stronger sense Excellence were important intermediaries Here the researcher learnt about the process of accountability than had previously been in preparing researchers for jury meetings. of gaining respect within the community present. Community members valued the jury process through respectful engagement rather than I think that it means that everything that I as an opportunity to express and affirm through professional titles. Yet the articulation plan to do in the future, I’ll always keep in cultural protocols in terms of observing of those titles was evidence of respect. the back of my mind that I’m going to have rules regarding acknowledging country, Interestingly, few researchers articulated their to present it and be accountable to the jury. telling one’s own identity story, attending to low cultural/community literacy or saw it as And there’s nothing like presenting research women’s/men’s and sorry business, managing a problem prior to encountering the jury, but in person, face-to-face with members of shame or shameful issues, attending to Elders, their narratives revealed how the interface the community to focus your mind on, is and inclusion of young people’s voices. These of engagement via the jury prompted a this really in the community’s best interest? rules and protocols were negotiated and You can perhaps kid yourself that it’s in the deeper and unanticipated understanding of discussed. community’s best interest when really it’s local community cultural arrangements. For All of us here are staunch on our culture in your best interest or some other interest. the Indigenous researcher, the challenge of and our customs ... I want to support my But there’s nothing like actually having to navigating between community and research community and know that my Elders that go and present and make you think well, protocols was revealed. sit with me here, that I want to do them a what am I going to say? Is this really – what There have been times where the jury response am I going to get? Because you service and to show that us young people has scrutinised the researchers ... I felt don’t want to go to that jury and have an are here to support them as well and to as the Indigenous person in this service, uncomfortable experience. That would learn the process. – Jury member, young supporting this process, that I probably be terrible. – Researcher, male General Aboriginal male should’ve been a bit more upfront ... in Practitioner Researchers had the opportunity to learn terms of ensuring the cultural safety of all For the Indigenous researcher, the jury about community protocol from a different participants that come to the jury ... I know process was empowering because, despite one of the jury members is very affected by perspective. One researcher, whose proposal the potential challenges personally, it sniffing within her family and youth suicide was not initially supported by the jury, enabled a new type of research engagement ... I got a sense that she felt uncomfortable reflected on her own experiences and how to emerge; one that does not exploit, during that time [presentation on project she learned about community cultural but respects Indigenous peoples, their about inhalant use] and I thought...I wish I processes through that engagement. The knowledge and perspectives. could’ve handled that better.” – Researcher researcher was initially challenged in her and Indigenous community member One of our Elders in the jury constantly understandings of the community but talks about the need to be respectful and through this process learnt how to navigate Jury members and researchers spoke of honour the dignity of human beings. And these relationships. the longer-term effects of the jury process he’s experienced a lifetime where that hasn’t for them personally and collectively. The I came back to the jury at the next been given to him. And I like that the jury meeting with a revised proposal. I actually outcome of empowerment was expressed does that. We respect our community ... I’m acknowledged the fact that I had been through accounts of a more collaborative proud that we put on a good day for them ... really challenged by [the discussions at health service research agenda but extended and people walk away feeling that they’ve the previous Jury meeting]… but that I’d beyond these to include new and strong been looked after. And I love that we give really learnt from it. I’d gone away and representations of community, better Vol. 40 (Suppl. 1) 2016 Australian and New Zealand Journal of Public Health S93 © 2015 The Authors Bond, Foley and Askew people that feeling in this research process Jury members took pride in their jury privileging Indigenous voices, experiences and we should be doing that. – Researcher participation and saw tremendous value in and perspectives in informing urban and Indigenous community member health research, while remaining cautious Indigenous primary health care research. of its exploitative possibilities. Rather than The demarcation between ‘lay’ people and examine specific research methods, jury ‘experts’ was blurred with jury members and Discussion members tended to question the researchers researchers bringing both expertise and in terms of their personal background, knowledge gaps. Interestingly, concerns The importance of meaningful engagement professional work, and commitment to about the health literacy of community of Indigenous peoples and communities Indigenous health and the local Indigenous members were soon overshadowed by in health research is recognised as a key 11,13 community. The jury assessed the spirit opportunities that health researchers gained component of ethical research. There and integrity, not of the research, but of the to improve their community cultural literacy. is a growing body of literature describing 3,6,8,17,21,36-40 researchers, much to the researchers’ surprise. effective engagement strategies. Narrative inquiry as a form of evaluation of The examination of the researcher’s integrity However, we note that for some researchers the Inala Community Jury proved useful as was factored into jury determinations and research institutions, the ethical, it enabled a raft of unanticipated benefits of which appeared to be influenced by a moral and cultural imperative to engage the model to emerge. Through this approach complex interplay of factors including the Indigenous communities in research practice we were able to capture the deeper stories or perceived benefits of the research for the 42 (p.227) and governance can be overlooked or “private contexts of practice” expressed local community, jury members’ personal undervalued. Moreover, some researchers by jury members and researchers, which attitudes and experiences of the health may be ill-prepared to engage effectively with we would not have gained through a more issue being researched, the researcher’s Indigenous people and communities and traditional process/outcome evaluation. We presentation style and personality, and the the time taken to do so can be perceived as acknowledge our central role as co-narrators strength of the researcher’s relationship with a barrier to engagement. We acknowledge in this study, as representatives of the health the community prior to presenting to the that this model of engagement has required service, as researchers, as a facilitator and jury. This form of inquiry prompted greater a significant investment from the service in as a local Indigenous community member. researcher reflexivity and was evidenced terms of jury coordination and facilitation, as These positions enabled us to more fully in most researcher accounts resulting in a well as allowing sufficient time in the research describe the jury model, and make sense of greater sense of self-efficacy in engaging with process for review and approval by the jury. the accounts of researchers and Indigenous Indigenous people in clinical, community Additionally, there were financial outlays community members. and research environments. We simply did with venue hire, catering and jury member not find a procedural observance to ethical remuneration; however, the return on these Conclusion guidelines or rules among the researchers investments has been substantial. Rather than interviewed; rather we found a highly valued The Centre of Excellence is still new in act as impediment to research, the jury model richer understanding of the Indigenous transformative practice in Indigenous described here facilitated better research by community cultural context where the health research and we are cautious not to enhancing individual researcher skills and researchers were operating. overstate the significance of the Community knowledge, community accountability and 29 Jury as ‘the model’ that remedies the more respectful and appropriate engagement The social justice goal of Citizens’ Juries was politics of community engagement and with Indigenous knowledge and perspectives evidenced in the accounts of jury members governance of Indigenous health research. within the local community cultural context. and researchers. Both reflected on the This study highlights the benefits that can The benefits derived by researchers extended shift in power of these relationships made be derived from meaningful engagement of beyond research practice to enhanced clinical possible through the model (e.g. face-to-face Indigenous peoples and communities in the practice. meeting in a community rather than clinical governance of health research. We recognise setting, community members outnumbering Similarly for jury members, the jury was a site that trusting and respectful relationships researchers, researcher/clinician seeking of agency and activism that extended beyond with Indigenous communities is central permission rather than instructing). Central reviewing health research within the service. to meaningful Indigenous engagement to the transformative possibilities of the jury Important community work operated within in health research and acknowledge that model was the transformation of hierarchical and outside of the jury processes with jury much of the jury’s work benefits from the relationships between researchers and members enacting, affirming, articulating relationship the service has established Indigenous people. Not simply ‘subjects’ and maintaining individual and collective with the local community over the past 20 of research, the jury model repositioned cultural agendas. Through this process, years. The interface between other research Indigenous people as ‘contributors’ and to new and positive narrative truths could be institutions and communities will differ from some extent ‘drivers’ of Indigenous health asserted about the Indigenous community, ours. Regardless of the different contexts in research. The Community Jury operates as and Indigenous “ways of knowing, being which Indigenous people and researchers 41 more than a convenient rhetorical device and doing” were made visible to health operate, there remains a cultural, political and to rebrand existing research processes. researchers. We observed that jury members ethical imperative to reposition Indigenous The jury processes inspired transformative were not resistant to health research within peoples from passive subjects of research research practice because it transformed their community but rather, wanted to ensure to autonomous actors in health research relationships of power between Indigenous that health research would lead to improved governance. people, researchers and research institutions, health outcomes for their community. S94 Australian and New Zealand Journal of Public Health Vol. 40 (Suppl. 1) 2016 © 2015 The Authors Evaluation of Indigenous research governance model 13. 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National Health and Medical Research Council, 29. Wakefield T. Citizens Juries: A Radical Alternative for Mooney facilitated our first jury and was, and Consumers’ Health Forum of Australia. Statement Social Research. Guildford (UK): University of Surrey continues to be, an inspiration for our work. on Consumer and Community Participation in Health Department of Sociology; 2002. and Medical Research [Internet]. Canberra (AUST): 30. Mertens DM. Transformative Research and Evaluation. We also acknowledge the contribution of Commonwealth of Australia; 2001 [cited 2015 Feb New York (NY): Guilford Press; 2009. the local Aboriginal and Torres Strait Islander 11]. Available from: http://www.nhmrc.gov.au/_files_ 31. Bell J. Narrative inquiry: More than just telling stories. nhmrc/publications/attachments/r22.pdf TESOL Q. 2002;36(2):207-12. Community Jury members, whose tireless 16. Couzos S, Lea T, Murray R, Culbond M. ‘We are not just 32. Trahar S. 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Culture, Ethics and Participatory Methodology specialist referral for developmental and behavioural in Cross-Cultural Research. Aboriginal Politics and Public problems in a Queensland urban Aboriginal and Torres Sector Management Research Paper No.: 7. Brisbane Strait Islander community: A cross-sectional study. Aust (AUST): , Griffith University Centre for Australian Public Fam Physician. 2014;43(9):640-3. Sector Management; 1998. Vol. 40 (Suppl. 1) 2016 Australian and New Zealand Journal of Public Health S95 © 2015 The Authors http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Australian and New Zealand Journal of Public Health Wiley

“It puts a human face on the researched” – A qualitative evaluation of an Indigenous health research governance model

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Wiley
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© 2016 Public Health Association of Australia
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1326-0200
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1753-6405
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10.1111/1753-6405.12422
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26260982
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Abstract

research has grown in recent Objective: To describe the Inala Aboriginal and Torres Strait Islander Community Jury for Health Wdecades, its inglorious history Research, and evaluate its usefulness as a model of Indigenous research governance within has often left Indigenous Australians feeling 2-8 exploited. At worst, research acted as an an urban Indigenous primary health care service from the perspectives of jury members and overt tool of colonial control espousing and researchers. enacting racial pseudoscientific theory and, Methods: Informed by a phenomenological approach and using narrative inquiry, a focus at best, Aboriginal and Torres Strait Islander group was conducted with jury members and key informant interviews were undertaken with peoples, communities, aspirations and researchers who had presented to the Community Jury in its first year of operation. 9,10 realities were ignored. Little attention was Results: The jury was a site of identity work for researchers and jury members, providing an given to the need for Indigenous people to opportunity to observe and affirm community cultural protocols. Although researchers and own, drive and benefit from health research. jury members had differing levels of research literacy, the jury processes enabled respectful This agenda emerged more recently through communication and relationships to form, which positively influenced research practice, the introduction of national guidelines for community aspirations and clinical care. ethical research in Aboriginal and Torres Strait Discussion: The jury processes facilitated transformative research practice among researchers Islander health, which promote Indigenous and resulted in transference of power from researchers to the jury members, to the mutual community ownership, consent, control and benefit of both. engagement through principles of respect, Conclusion: Ethical Indigenous health research practice requires an engagement with reciprocity, responsibility, equality, survival Indigenous peoples and knowledge at the research governance level, not simply as subjects or and protection as well as spirit and integrity. objects of research. These guidelines provide encouragement for greater and more respectful inclusion Key words: ethics, community engagement, research governance, Aboriginal and Torres Strait of Indigenous people in research, although Islander peoples they can result in the procedural observance of rules or tokenistic gesturing to appease 12-15 appropriate Aboriginal organisation(s) is The Southern Queensland Centre of human research ethics committees. recommended, as is giving Indigenous Excellence in Aboriginal and Torres Strait The push towards meaningful engagement people the opportunity to contribute to Islander Primary Health Care (Centre of of Indigenous people and communities guiding and monitoring research. Non- Excellence) has grappled with many of in research has spawned an emerging Indigenous researchers identify the need the tensions articulated in the literature. literature describing more precisely how this for greater guidance around navigating Established as an Indigenous primary health 16-20 can be achieved. Despite this, defining community politics while concerns care service in Inala (an outer western suburb ‘community’ remains problematic. The diverse have been raised about conceptualising of Brisbane), the service provides primary and dispersed nature of urban Indigenous ‘community’ in these endeavours and the health care, specialist clinics, allied health communities may make consultation with assumed capacities of communities to and community engagement initiatives, ‘community’ challenging. Accessing a broad participate. but also has an expanding research program range of community members through 1. Oodgeroo Unit, Chancellery, Queensland University of Technology 2. Southern Queensland Centre of Excellence in Aboriginal and Torres Strait Islander Primary Health Care; School of Population Health, University of Queensland 3. Discipline of General Practice, School of Medicine, University of Queensland Correspondence to: Dr Chelsea Bond, Oodgeroo Unit, Chancellery, Queensland University of Technology, GPO Box 2434, Brisbane, QLD 4001; e-mail: chelsea.bond@qut.edu.au Submitted: November 2014; Revision requested: January 2015; Accepted: March 2015 This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made. The authors have stated the following conflict of interest: Co-authors Askew and Foley are employed by the Southern Queensland Centre of Excellence in Aboriginal and Torres Strait Islander Primary Health Care, which resources and coordinates the Inala Community Jury. The relationship between the researchers and the study has been acknowledged in the paper. Aust NZ J Public Health. 2016; 2016; 40 (Suppl. 1) S89-S95; doi: 10.1111/1753-6405.12422 Vol. 40 (Suppl. 1) 2016 Australian and New Zealand Journal of Public Health S89 © 2015 The Authors Bond, Foley and Askew 23-27 and profile. Despite being an ‘Indigenous’ approved by the jury, and although the jury were asked to recount their experiences health service, the Centre of Excellence process is supplementary to existing ethics of engagement with the jury, and the is government-run, thus intensifying the requirements, the local Human Research strengths and challenges of the model of imperative for a local Indigenous community Ethics Committee will not approve a project engagement in terms of how it influenced governance model for health research within that has not been approved by the jury. their practice. The Community Jury focus the community. The Centre of Excellence group explored jury members’ motivations Jury meetings are convened quarterly for established the Inala Community Jury for joining the jury and experiences of the between four and seven hours. Researchers for Aboriginal and Torres Strait Islander process, alongside challenges, strengths and are required to present directly to the jury Health Research in 2011 to ensure that the recommendations for the model. While there at these meetings with a one-page brief research undertaken by the service was were broad domains of inquiry, the research supported by an oral presentation and about in the community’s interests and that the instruments remained largely unstructured one hour for discussion. The researchers assessment of ‘community interest and to enable participants to tell stories that were explain, in lay terms, why the research is being benefit’ would be determined by the local meaningful for them. Support to undertake done, the methods being used, and how the Indigenous community. this study was provided by the Community research will benefit the community. Jury Jury, and ethical clearance was obtained from Conceptualisation and development of the members may question the researchers about the Metro South Human Research Ethics Community Jury was shaped by a process any aspect of the research to be confident Committee. called ‘Citizens’ Juries’ and/or ‘deliberative that the research will benefit the community 28,29 democracies’. While common in the US and that the burden of participation (if any) is Participants and data collection and UK, Citizens’ Juries have had limited warranted. Researchers return to the jury on applications within health research contexts completion of their research and report back Of the 12 researchers who had presented in Australia. Citizens’ Juries enable ‘lay’ their main findings with updates provided to the jury in its first year of operation, nine involvement in decision-making processes to each meeting in the interim. Researchers were invited to participate in this study to that directly affect them and usually involve may also engage with the jury for help represent a broad cross-section of researchers a randomly selected broad cross-section resolving specific aspects of the research, e.g. participating in the jury processes. The types of the community considering evidence recruitment strategies. If the jury supports a of research undertaken during this time from ‘experts’, much like a traditional jury. proposed research project, a letter of support included quantitative and qualitative, clinic Social justice is a central goal of citizens’ signed by the jury Chair is provided to the and community-based research in areas juries, in that non-specialist knowledge is researchers. If a research proposal is not as diverse as antenatal care, inhalant use, valued, particularly from citizens previously supported, the research cannot progress, nutrition, dietetic services, social prescribing excluded from participating in traditional however, researchers may return to the jury by GPs, and childhood developmental and 29 25-27,33 decision-making processes. It was this with a revised proposal for review. behavioural problems. During the goal that was most alluring to the Centre time of this study, the jury endorsed all of Excellence, given the historical and the research that was presented, but not Methods contemporary context of Indigenous necessarily at the first presentation or without engagement in and governance of health revision or amendment. No researchers This study aimed to evaluate the usefulness research. Given that citizenship is a relatively refused to participate. Six of the researchers of the Community Jury as a model of new concept for Indigenous Australians, the were also clinicians (based at the Centre of community governance and engagement Centre for Excellence elected to use the term Excellence or elsewhere) while the remaining from the perspectives of jury members and ‘Community Jury’ in lieu of ‘Citizens’ Jury’. This three were full-time researchers. Two of these researchers. This study did not aim to evaluate nomenclature was also endorsed by the jury researchers are co-authors (CB and DA), and the jury according to predetermined markers members at the inaugural jury meeting. one is Indigenous and a jury facilitator (CB). of success. Rather, the study is informed by Interviews were conducted by authors CB a phenomenological approach in which The Inala Community Jury Model and WF. “human perception, not external influences or objects in the material world … is at the The Community Jury of 14 Aboriginal and All jury members were invited to participate 30 (p.181) core of the analysis”. Thus the study Torres Strait Islander community members; in the focus group, which author WF elucidates the value of the jury model from representatives of the four local Indigenous conducted after a Community Jury meeting. the narrative accounts of those participating community-controlled organisations All members in attendance at the meeting in the process. and 10 members who were purposefully (n=12) elected to participate. All participants selected following a call for expressions of provided written consent prior to data interest to ensure a mix of ages, gender and Design collection. The focus group and the interviews both Aboriginal and Torres Strait Islander were audio-recorded with participant consent The study used narrative inquiry to explore members. Independently facilitated, jury and transcribed and de-identified prior to the impact of engagement between members are paid for their time and review analysis. researchers and community members as all research being undertaken by or with the they described their experiences of jury We acknowledge our multiple subject positions Centre of Excellence prior to its proposed participation. Narrative inquiry works with as both insiders and outsiders (as researchers, commencement and/or development. No “people’s consciously told stories, recognising Indigenous community member, employees research can be undertaken at or through that these build on deeper stories of which of the Centre of Excellence, jury participants the Centre of Excellence without being 31 (p.209) people are often unaware”. Researchers and jury facilitator). While there are benefits S90 Australian and New Zealand Journal of Public Health Vol. 40 (Suppl. 1) 2016 © 2015 The Authors Evaluation of Indigenous research governance model to our insider status in terms of “generating health research agenda, but nonetheless, I remember thinking at the time of the Community Jury, “this is actually quite contextually embedded knowledge that were complementary to that task. Both 34 (p.60) good”. Like, of course, “Who am I to think I emerges from experience” we consciously parties articulated experiences of strength, can just go in?” – Researcher, female allied sought to minimise bias in data collection benefit and usefulness that related to health professional and analysis. WF conducted the jury focus personal, collective, professional, cultural group because she did not have a role in and/or clinical practice. Incorporated in this Engaging in discussions with jury members, coordination or facilitation of the jury. Further, analysis are the first author’s reflections as a receiving guidance and eliciting support from researchers were interviewed by either WF or researcher, facilitator and local Indigenous a broad cross-section of the local Aboriginal CB, depending on which had had the least prior community member, and are presented here and Torres Strait Islander community contact with the researcher. Two researchers to highlight the intersecting nature of these represented on the jury increased researchers’ from within the Centre of Excellence research tasks. confidence in working in this space, and team were not invited to participate in this in the relevance and importance of their research to minimise the over-representation of Engagement as a site for identity work research. For the Indigenous researcher, the the internal research staff. [personal and community] jury provided a platform for her professional identity to be discernible within her own For both jury members and researchers, Analysis community. the Community Jury operated as a site for Authors CB and WF collaborated to organise important identity work in terms of both I’ve always felt living in this community the data according to the broad domains of personal and broader community identity. as a researcher, the essence of who I am inquiry in relation to the strengths, challenges professionally is really at the background The jury provided the opportunity to and recommendations for improving the jury because it doesn’t make sense to most have one’s identity affirmed, either as an people that I engage with socially. What model. All transcripts were coded together Indigenous person and/or as a researcher I like about the jury is it allows me to yarn using NVivo version 9. In analysing the data working in Aboriginal and Torres Strait with my own mob about the stuff that I love according to these themes, the research team Islander health research. For one jury doing ... I can ‘out’ myself as a researcher. – identified that there was little demarcation member, participating in the jury was Researcher and Indigenous community between ‘strengths’ and ‘challenges’ . an opportunity for greater Indigenous member The challenges of the model provided community contact, thus enabling a opportunities for learning and reflection, confirmation of his cultural identity and Jury members’ narratives also revealed the which were then recounted by research improvements in his overall wellness. In important community identity work that participants as strengths. Thus, further terms of his motivations for participation, this was undertaken through jury meetings. Jury analysis was undertaken within the research identity work appeared to have primacy over members spoke about jury participation as team to explore the key narratives that the health research agenda. an opportunity to ‘represent’ community emerged in terms of the usefulness of the interests, but also acknowledged the I joined because for years ... I wasn’t involved jury model as stated explicitly and implicitly in the Aboriginal movement ... And I said to obligation they felt to ‘respond’ to community within participants’ accounts. my wife, “I feel like I need that black contact” interests as a result of jury participation. because there was something missing in Despite our attempts to minimise bias in I talk to family about it and I talk to my life. And that [the Jury] kind of filled me data collection, we acknowledge that our work colleagues, working in Indigenous up, and I feel much happier for it now. Jury organisations … it depends on the topic. relationship to the research participants member – Aboriginal male elder So where I work if I’m dealing with young and the Community Jury may be seen as Indigenous women who have recently problematic. However, the relatedness of Other Jury members described how the fallen pregnant, I’ll say, “Oh, I’ve heard the researchers to the participants and the jury provided a mechanism for them to be there might be a program going on at research governance model enabled the ‘active’ within their community and perform the medical centre. Go and ask about this capturing of nuances in the narratives of their community duties. Meanwhile, for or that”. – Jury member, middle-aged both researchers and community members. researchers, the jury processes provided Aboriginal female During the analysis process, the findings were security in their own identity as researchers presented back to both jury members and Jury members readily identified the working in an Indigenous health context. researchers for member checking; of which all importance of representing the community’s This was particularly important as eight concurred with the results. strengths to visiting researchers. These efforts of the nine participating researchers were were witnessed in researcher accounts and non-Indigenous, and conscious they could reconfigured their pre-existing imaginings potentially subjugate Indigenous voices and Results of the community. A number of researchers aspirations through research. recounted stories of being approached by Researchers and Community Jury members’ So being new, coming in, as a non- jury members to clarify the findings from narratives told two different, but interrelated Aboriginal person and then thinking particular research projects so that they could ...”Oh God, they’re probably thinking who’s ‘stories’ of the usefulness of the Community spread the word within the community. For this non-Aboriginal person coming to do Jury as a model of Indigenous community example, an antenatal study revealed local research again?” So that was in my mind. governance of health research. The benefits women were taking iron supplements early And after the meeting and them being so that jury members and researchers derived lovely and accepting of me ... and feeling in pregnancy but not folate. A group of were not limited to the Centre of Excellence’s like they were approving my research ... senior women sought clarification on what goal of an Indigenous community-controlled Vol. 40 (Suppl. 1) 2016 Australian and New Zealand Journal of Public Health S91 © 2015 The Authors Bond, Foley and Askew advice they should be giving young mothers Jury members spoke of having to get communication and practice rather than a with regards to increasing folate intake pre- researchers to speak ‘their’ language and deficiency of the Indigenous community. conception and in early pregnancy. Being said they were quite comfortable asking A particularly interesting aspect of talk approached in this manner proved powerful researchers to adjust their terminology. acknowledged by jury members and for researchers, particularly among those who These manifestations of respect enabled a researchers was the use of story by jury were clinicians within the service, as their safe space for jury members to freely ask members. Jury members frequently primary encounters with Indigenous people questions of the researchers. Researchers responded to researchers and each other were with individuals who were sick and at were aware of differing levels in general through the recounting of stories. There were their most vulnerable, thus distorting the health and health research literacy, sad stories, amusing stories, and stories that imaginative possibilities of Aboriginality and particularly as the research team usually had been recounted more than once. At of the local community. needed to edit the one-page briefs prior times, the stories shared related specifically to submission to the jury to ensure their You can sometimes get a sense in the clinic to a jury member’s experience of the health accessibility for a ‘lay’ audience. Upon that the community is a bit disengaged and research issue, while other times, the stories don’t really want to do anything with their reflection, some researchers questioned shared revealed the broader historical, social, health. I’ve tried very hard to quell my own whether the lack of health research cultural and political context of Indigenous nihilism in those types of consultations but literacy of jury members was a barrier health. Jury members highly valued this it was a really positive injection of optimism to meaningful engagement. However, it method of transmitting knowledge. For and activism that this Jury gave me. And I seemed that this ‘barrier’ was also an enabler some jury members, witnessing stories were felt really energised and I think it really has to more meaningful understandings of the privileged opportunities, particularly those helped back in the clinic. – Researcher, community attitudes, values and knowledge between Elders and young people, serving male General Practitioner of a particular health issue. cultural identity work as described earlier. I would know that now going in, that I The opportunity to engage with local I personally love coming [to the jury would need to informalise my terminology community members as a collective meetings] and I know that our focus is the whereas I almost came expecting them to and cohesive group invested in health research and our new projects, but I love know what an [allied health professional] advancement, enabled researchers to rethink sitting here and I love hearing about the was… And actually speaking to them in their own imaginings of the ‘community stories. Everybody gives their own little the Jury meeting and asking questions identity’ and think critically about how these personal story about what they’re talking about “Well, hang on you want to do this about. I personally love hearing how it were enacted in research and clinical practice. research, but what do you do?” … And I was for Uncle and for Auntie when they Most researchers spoke of their surprise was like, “Oh hang on, I hadn’t even thought were growing up … you have more respect at appearing before a jury of community of that”…They don’t need to accept the and it makes you feel so grateful for what members who each appeared strong research but they have to accept what a we have today. – Jury member, young physically and culturally, individually and [health professional] is in this community… Aboriginal female collectively. The community identity work I found I wasn’t talking about the research, undertaken by the jury was transformative Here, the mechanics of health research it was talking about who I was and I think for researchers, with the local Indigenous ran secondary to learning, expressing and even where I was from before working community reconfigured from passive, ill, affirming community cultural protocols. The there, so it was a lot more than just the subjects of research to active, engaged and process of talking and learning through story research ... So always in the beginning of healthy citizens. was an unfamiliar experience for some of the my consultations now I ask them [patients] “ What do you understand about me researchers, particularly those who expected Learning to talk and learning being here for you as an [allied health ‘traditional’ ethics review procedures. Some through talk professional]?” – Researcher , female allied researchers expressed concern that jury health professional members might have gone off on a tangent The power of yarning was a key theme to and that discussions weren’t focused on the emerge in the narratives of researchers and The questions asked of researchers by the research questions. Interestingly, four of the the jury members. Experiencing respectful jury members was revealing for researchers researchers interviewed articulated how talk was important to jury members and was in ways that they hadn’t anticipated, but led jury member interactions influenced their witnessed when researchers acknowledged to enhanced practice. Researchers could research agenda, not through specifically country, showed signs of nervousness, and not hide behind shared understanding of articulated directives but rather as a result spoke to jury members in a way that they research language and practice, and instead of thinking deeply about the jury members’ could understand. Not being spoken ‘down to’ had to develop translational skills in health stories. In this context, Indigenous stories was the basis of respectful engagement and research terminology. Researchers also had to operated powerfully to convey a deeper empowering encounters. learn how to communicate their relatedness understanding of Indigenous experiences, to the proposed research. Jury members We’re not told, we’re not spoken down to; which influenced health research practice like it’s not a regimental thing or it’s a “we’re examined less the researcher’s methodology, despite the apparent lack of mastery of health above you, you black fellas in Inala, we and more the researcher’s identity, passion research language by jury members. know what’s best for you”. It’s not like that, and relationship to the work they were So the main thing I think in everything that it’s empowering us to empower ourselves. doing. The health research literacy gap thus – Jury member, young Aboriginal male I’ve been involved with here has been about became part of the task for better research moving knowledge – things that I knew but S92 Australian and New Zealand Journal of Public Health Vol. 40 (Suppl. 1) 2016 © 2015 The Authors Evaluation of Indigenous research governance model knew in my head, to thinking about what thought about the issues that they had health outcomes, and cohesive community that would actually feel ... around what raised. I felt very timid at that meeting … governance processes. does it mean to be an Aboriginal or Torres I didn’t know how that, that would have I think our confidence goes up a notch when Strait Islander person in Australia. What is gone down. But [local researcher] said that we are respected on what final outcomes life like for people? What is it like for some of went down really really really well, that she we come to and I think that’s very important the Elders who grew up, say, on a mission? could see from people’s reactions that they otherwise you go away disillusioned. We’re What would that actually mean? What were “Oh,[she] listened, she heard!” And kicking goals and these goals are going to would that actually be like? – Researcher, something I did notice after that is that be long-term. We’re leaving a legacy for female researcher one of the jury members started calling young people to follow. That’s how I feel me Dr Barb* at that meeting. What was as an Elder. – Jury member, Aboriginal interesting is that – the previous meeting male Elder An enabler of empowerment and where I was in the hole, that same jury accountability Jury members felt empowered as a result member was calling [local researcher] of respectful engagement with researchers The jury process enabled researchers Doctor and there was “Dr [name]” and and the health service and the respect given and jury members to explore and affirm there was Barbie* [me]. And that was an to the jury’s decisions. The respect that local community protocols and proved interesting experience as well, I mean I knew researchers had for the jury was evidenced empowering for both, albeit challenging at it. But it was an absolute, have it there in my in each of their accounts. The act of meeting times. For example, some researchers were face that, in this setting, [local researcher] face-to-face with community stakeholders to uncertain about local protocols, appropriate was the one with respect already. And I’m explain the research was new and daunting language use, and/or were unfamiliar still way – got a long way to go to really for most researchers. However, this model of with learning through story. However, gain that respect. – Researcher, female engagement was ultimately empowering, researcher [*pseudonym] the research team within the Centre of providing researchers with a stronger sense Excellence were important intermediaries Here the researcher learnt about the process of accountability than had previously been in preparing researchers for jury meetings. of gaining respect within the community present. Community members valued the jury process through respectful engagement rather than I think that it means that everything that I as an opportunity to express and affirm through professional titles. Yet the articulation plan to do in the future, I’ll always keep in cultural protocols in terms of observing of those titles was evidence of respect. the back of my mind that I’m going to have rules regarding acknowledging country, Interestingly, few researchers articulated their to present it and be accountable to the jury. telling one’s own identity story, attending to low cultural/community literacy or saw it as And there’s nothing like presenting research women’s/men’s and sorry business, managing a problem prior to encountering the jury, but in person, face-to-face with members of shame or shameful issues, attending to Elders, their narratives revealed how the interface the community to focus your mind on, is and inclusion of young people’s voices. These of engagement via the jury prompted a this really in the community’s best interest? rules and protocols were negotiated and You can perhaps kid yourself that it’s in the deeper and unanticipated understanding of discussed. community’s best interest when really it’s local community cultural arrangements. For All of us here are staunch on our culture in your best interest or some other interest. the Indigenous researcher, the challenge of and our customs ... I want to support my But there’s nothing like actually having to navigating between community and research community and know that my Elders that go and present and make you think well, protocols was revealed. sit with me here, that I want to do them a what am I going to say? Is this really – what There have been times where the jury response am I going to get? Because you service and to show that us young people has scrutinised the researchers ... I felt don’t want to go to that jury and have an are here to support them as well and to as the Indigenous person in this service, uncomfortable experience. That would learn the process. – Jury member, young supporting this process, that I probably be terrible. – Researcher, male General Aboriginal male should’ve been a bit more upfront ... in Practitioner Researchers had the opportunity to learn terms of ensuring the cultural safety of all For the Indigenous researcher, the jury about community protocol from a different participants that come to the jury ... I know process was empowering because, despite one of the jury members is very affected by perspective. One researcher, whose proposal the potential challenges personally, it sniffing within her family and youth suicide was not initially supported by the jury, enabled a new type of research engagement ... I got a sense that she felt uncomfortable reflected on her own experiences and how to emerge; one that does not exploit, during that time [presentation on project she learned about community cultural but respects Indigenous peoples, their about inhalant use] and I thought...I wish I processes through that engagement. The knowledge and perspectives. could’ve handled that better.” – Researcher researcher was initially challenged in her and Indigenous community member One of our Elders in the jury constantly understandings of the community but talks about the need to be respectful and through this process learnt how to navigate Jury members and researchers spoke of honour the dignity of human beings. And these relationships. the longer-term effects of the jury process he’s experienced a lifetime where that hasn’t for them personally and collectively. The I came back to the jury at the next been given to him. And I like that the jury meeting with a revised proposal. I actually outcome of empowerment was expressed does that. We respect our community ... I’m acknowledged the fact that I had been through accounts of a more collaborative proud that we put on a good day for them ... really challenged by [the discussions at health service research agenda but extended and people walk away feeling that they’ve the previous Jury meeting]… but that I’d beyond these to include new and strong been looked after. And I love that we give really learnt from it. I’d gone away and representations of community, better Vol. 40 (Suppl. 1) 2016 Australian and New Zealand Journal of Public Health S93 © 2015 The Authors Bond, Foley and Askew people that feeling in this research process Jury members took pride in their jury privileging Indigenous voices, experiences and we should be doing that. – Researcher participation and saw tremendous value in and perspectives in informing urban and Indigenous community member health research, while remaining cautious Indigenous primary health care research. of its exploitative possibilities. Rather than The demarcation between ‘lay’ people and examine specific research methods, jury ‘experts’ was blurred with jury members and Discussion members tended to question the researchers researchers bringing both expertise and in terms of their personal background, knowledge gaps. Interestingly, concerns The importance of meaningful engagement professional work, and commitment to about the health literacy of community of Indigenous peoples and communities Indigenous health and the local Indigenous members were soon overshadowed by in health research is recognised as a key 11,13 community. The jury assessed the spirit opportunities that health researchers gained component of ethical research. There and integrity, not of the research, but of the to improve their community cultural literacy. is a growing body of literature describing 3,6,8,17,21,36-40 researchers, much to the researchers’ surprise. effective engagement strategies. Narrative inquiry as a form of evaluation of The examination of the researcher’s integrity However, we note that for some researchers the Inala Community Jury proved useful as was factored into jury determinations and research institutions, the ethical, it enabled a raft of unanticipated benefits of which appeared to be influenced by a moral and cultural imperative to engage the model to emerge. Through this approach complex interplay of factors including the Indigenous communities in research practice we were able to capture the deeper stories or perceived benefits of the research for the 42 (p.227) and governance can be overlooked or “private contexts of practice” expressed local community, jury members’ personal undervalued. Moreover, some researchers by jury members and researchers, which attitudes and experiences of the health may be ill-prepared to engage effectively with we would not have gained through a more issue being researched, the researcher’s Indigenous people and communities and traditional process/outcome evaluation. We presentation style and personality, and the the time taken to do so can be perceived as acknowledge our central role as co-narrators strength of the researcher’s relationship with a barrier to engagement. We acknowledge in this study, as representatives of the health the community prior to presenting to the that this model of engagement has required service, as researchers, as a facilitator and jury. This form of inquiry prompted greater a significant investment from the service in as a local Indigenous community member. researcher reflexivity and was evidenced terms of jury coordination and facilitation, as These positions enabled us to more fully in most researcher accounts resulting in a well as allowing sufficient time in the research describe the jury model, and make sense of greater sense of self-efficacy in engaging with process for review and approval by the jury. the accounts of researchers and Indigenous Indigenous people in clinical, community Additionally, there were financial outlays community members. and research environments. We simply did with venue hire, catering and jury member not find a procedural observance to ethical remuneration; however, the return on these Conclusion guidelines or rules among the researchers investments has been substantial. Rather than interviewed; rather we found a highly valued The Centre of Excellence is still new in act as impediment to research, the jury model richer understanding of the Indigenous transformative practice in Indigenous described here facilitated better research by community cultural context where the health research and we are cautious not to enhancing individual researcher skills and researchers were operating. overstate the significance of the Community knowledge, community accountability and 29 Jury as ‘the model’ that remedies the more respectful and appropriate engagement The social justice goal of Citizens’ Juries was politics of community engagement and with Indigenous knowledge and perspectives evidenced in the accounts of jury members governance of Indigenous health research. within the local community cultural context. and researchers. Both reflected on the This study highlights the benefits that can The benefits derived by researchers extended shift in power of these relationships made be derived from meaningful engagement of beyond research practice to enhanced clinical possible through the model (e.g. face-to-face Indigenous peoples and communities in the practice. meeting in a community rather than clinical governance of health research. We recognise setting, community members outnumbering Similarly for jury members, the jury was a site that trusting and respectful relationships researchers, researcher/clinician seeking of agency and activism that extended beyond with Indigenous communities is central permission rather than instructing). Central reviewing health research within the service. to meaningful Indigenous engagement to the transformative possibilities of the jury Important community work operated within in health research and acknowledge that model was the transformation of hierarchical and outside of the jury processes with jury much of the jury’s work benefits from the relationships between researchers and members enacting, affirming, articulating relationship the service has established Indigenous people. Not simply ‘subjects’ and maintaining individual and collective with the local community over the past 20 of research, the jury model repositioned cultural agendas. Through this process, years. The interface between other research Indigenous people as ‘contributors’ and to new and positive narrative truths could be institutions and communities will differ from some extent ‘drivers’ of Indigenous health asserted about the Indigenous community, ours. Regardless of the different contexts in research. The Community Jury operates as and Indigenous “ways of knowing, being which Indigenous people and researchers 41 more than a convenient rhetorical device and doing” were made visible to health operate, there remains a cultural, political and to rebrand existing research processes. researchers. We observed that jury members ethical imperative to reposition Indigenous The jury processes inspired transformative were not resistant to health research within peoples from passive subjects of research research practice because it transformed their community but rather, wanted to ensure to autonomous actors in health research relationships of power between Indigenous that health research would lead to improved governance. people, researchers and research institutions, health outcomes for their community. S94 Australian and New Zealand Journal of Public Health Vol. 40 (Suppl. 1) 2016 © 2015 The Authors Evaluation of Indigenous research governance model 13. 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Australian and New Zealand Journal of Public Health – Wiley

Published: Apr 1, 2016

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