Development of Key Principles and Best Practices for Co-Design in Health with First Nations Australians
Abstract
:1. Introduction
2. Materials and Methods
2.1. Indigenist Methodology
2.2. Research Team
2.3. Governance
2.4. Ethics
2.5. Stakeholder Mapping and Recruitment
- First Nations cancer patients, carers and family members;
- Cancer policy experts and health care providers;
- First Nations researchers with experience in aspects of co-design and/or participatory research approaches.
2.6. Stakeholder Consultation
Online Yarning Circles (OYCs)
2.7. Data Analyses
3. Results
3.1. Profile of Participants
3.2. Qualitative Results
3.2.1. Stakeholder Feedback on the Theme: First Nations Leadership
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- Priorities and processes determined by First Nations communities;
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- Establishment of governance structures;
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- Support First Nations leadership.
“Aboriginal people need to have the priority voice, like the non-Indigenous people should be there to support them.”
“Sometimes I think [non-Indigenous] people can, and it’s rare perhaps, but people can feel, you may not have to, you know, be subservient. I think for some people, that can be a that can be one of those tensions to navigate.”
“It must be maintained and sustained throughout the entire process that non-Indigenous people and organizations take a collegial approach to sharing or deferring leadership.”
“It’s not just Aboriginal people with a PhD or like an academic job, but there’s community-based leaders and there’s leaders within our health services that have their own knowledge and wisdom, and we should also be recognizing that.”
“There are various categories of stakeholders involved and we need to engage the whole hierarchy.”
“I think leadership is always difficult to define, isn’t it? Because, you know, there’s we have Western concepts of leadership. We also have Aboriginal on concepts of leadership and sometimes leadership is not a word that’s used by mobs, basically because we don’t have that sort of Westminster, you know, legacy of what leadership looks like or those people in control, very different systems.”
“A certain organization and certain people, for example, carry a lot of influence in terms of implementation. And that’s why we need to find out, in whichever jurisdiction is engaged in delivering the program, who are the people that needs to be involved and also who are the levels of organization to be approached.”
“So that’s about engaging the right stakeholders or a broad range of stakeholders, but also making sure that you have that approval. But because that opens the door I guess for the rest of the community.”
“Communities are quite diverse, intricate as well. And so, who do you speak to within community? Just because one family or group may have given approval or support perhaps, they don’t get on so well.”
“There needs to be obviously appropriate governance and structures around this to ensure [First Nations leadership] and to facilitate broad participation and not just going to one Aboriginal person and ensuring a broader engagement from all stakeholder groups and that First Nations people are enabled and supported.”
“So challenging normal Western dominated leadership models to incorporate what Aboriginal leadership is because I think we all understand what Aboriginal leadership looks like, but when you’re negotiating with non-Aboriginal people there’s a lot of blockages and so there’s whether we get that commitment to change and to move and to improve.”
“While this is about Aboriginal leadership, quite often when we’re working with perhaps our community controlled organisations or other people, they’ve also got other things to do. So how can we support and embrace that and enable them in leadership around decision making and guiding the project or to service meaningful engagement.”
“And so, it’s making sure that there’s support built in around Aboriginal trust on people within communities to enable that leadership and to sort of walk beside them.”
“We tend to maybe go in and will do a good job of explaining our particular project and what’s going to happen. And we make this assumption that you know, Aboriginal, the people understand research, the processes, etc. and actually people don’t. And so then they’re working behind the eight ball already expecting to provide this leadership.”
“But unless you’ve got Aboriginal people sitting at decision making tables, you know, in day-to-day operational things, then you know, change what happened. Co-design doesn’t happen.”
“We need to call the shots on that we need to establish governance structures. So, who is kind of overseeing this and monitoring it, making sure it’s going okay, who who’s leading it? So that obviously, you know, these co-design things, it’s best if a blackfella is actually leading that because we know our community and how it affects us more so than maybe some non-Indigenous people might know.”
3.2.2. Stakeholder Feedback on the Theme: Culturally Grounded Approach
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- Centre a First Nations worldview;
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- Account for the continuing impact of colonisation;
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- Adopt a decolonising methodology;
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- Strive for cultural rigour.
“I think of course we want to adopt a decolonizing methodology, but I think sometimes that takes away from just claiming our own Indigenous knowledge and the way that we work. So, it sort of detracts from it. Let’s claim our Indigenous knowledges and our ways of working rather than focusing on a decolonizing methodology as such.”
“I think working towards more of a strength-based approach as opposed to deficit.”
“You said you want to have a strengths-based approach, but I think sort of missing is the big R-word there, which is racism and the acknowledgment of racism within the health system. We’re seeing more of a time because of this systematic racism is still across the whole system.”
“The centring of voices from voices and values. That really speaks loudly to me in this particular principle, the Aboriginal Torres Strait Islander voices and values. So, I’m really glad those words are there. But I also think that that it’s important for us to be inclusive of our cultural diversity.”
“I just have a problem with the term ‘practice cultural safety’, just like some simple thing. Let’s practice cultural safety. So can we do something about broadening that out to what we’re really meaning rather than just something that some of that let’s practice cultural safety has no meaning. But to me it’s just some fairly flippant you know, practice cultural safety, really. What does it mean to me?”
“That’s a really important part of this principle, that non-Indigenous stakeholders do cultural competency training, that they start to learn and understand respectful ways of talking to [community] and working with one another, acknowledging colonised privilege and countering that in order to achieve self-determination, equity, self-determination and equity.”
“…it’s one that builds on the cultural competency piece and that, that our non-Indigenous colleagues see that as an ongoing journey. So, it’s not just I’ve done a module in my workplace and now I’m ready to work with [community]. [The principle needs to] say something about it being ongoing and continuing like that.”
“So maybe it’s about the basic principles actually defining that cultural practice. Cultural safety in this principle remains to this. I don’t know. Yeah. Okay, well that’s great. We just have to be really concrete on what that means in this in this context. And yes, because I don’t think people understand organizations is still immature in that way to really understand it. They still haven’t really understood what cultural competence is about. They’ve just gotten to the stage of understanding cultural awareness.”
3.2.3. Stakeholder Feedback on the Theme: Respect
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- Practice cultural safety;
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- Embrace flexible and iterative processes;
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- Allow adequate time and resources;
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- Acknowledge and respond to First Nations diversity;
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- Seek appropriate community and ethical approvals;
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- Establish regular and sustained culturally appropriate communication;
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- Establish conflict resolution protocols;
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- Set reasonable expectations;
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- Provide fair renumeration;
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- Use First Nations branding and design.
“Engagement is continuing. It’s a continual learning. It’s just not a one-off call.”
“First Nations participation has to be not tokenistic. It’s trying to think in the opposite way to that, but you know, fully engaged but not, not tokenistic…authentic…”
“[communities], they’ve also got other things to do. So how can we support, support and embrace that, and enable them for leadership around decision making and sort of guiding the project or to service meaningful engagement… It’s maintained and sustained throughout the entire process and that non-Indigenous people and organizations also take a collegial approach to sharing or deferring leadership.”
“One of my bugbears is that government agencies continually expect Aboriginal people to contribute their time without being paid.”
“I do think that there’s still a lot of work to do… to encourage people to feel like it’s okay to take a bit longer time wise. I think still sometimes we as a collective were rushed through processes. Where actually our way is to give time, the time it needs.”
“I may have three months to do something. But that’s just me, you know? So, there’s tension there. Do I impose or compel people to do things with within three months with me or do I need to reflect on what it is I’m requesting, asking, seeking to do?”
3.2.4. Stakeholder Feedback on the Theme: Benefit to Community
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- Work to achieve tangible and sustainable positive outcomes;
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- Formalise First Nations knowledge ownership and sovereignty;
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- Enhance capabilities of First Nations Australians.
“…people will say “Oh, we’re gonna, you know, generate this knowledge for cancer, and that’s going to be a benefit to community” …how are you going to negotiate those benefits? And what about if community have different perceptions of what the benefit is? How are you going to navigate that? Usually the academics, they’re the ones that say what a benefit is rather than our community.”
“A lot of non-Indigenous people have become professors on our disadvantage… I critique them because usually it’s the same thing, “oh, we’re going to benefit to community it’s going to be that we hire an Aboriginal research assistant. Isn’t that going to be great? And they’re going to work for us”. What is that in reality? What are they doing? They’re collecting the data for you so you don’t have to do it. You don’t know Aboriginal people, you wouldn’t get the data if you walked the streets… So of course that’s going to benefit you. But in their eyes “benefit to community. I gave a job to a poor black person”. And then they’re going to take that data and they’re going to write whatever they want and do whatever they want.”
“…what is the point of any of this research or work unless it makes a meaningful difference at a grassroots level for our people?”
“What [community] are getting out of the partnerships and being clear and upfront around that because, you know, a lot of non-Indigenous researchers are also getting [benefits] out of the research working with community; we need to be upfront and acknowledge that…”
“But, you know, when you have a partnership and you work together on a project and then you write it up in a report and say you’ve got a sustained relationship with partners moving forwards in the future, that may only have benefits for one of the partners. So, they keep coming back to that First Nations group and saying, you know, we are consulting, we’re consulting about X, Y and Z with them… we keep going back to the same people and wanting more advice and more partnership, more direction, for what value for [community]? …It’s not mutual benefit.”
“You know, if we were to enhance capabilities, what would that look like in that context? Well, that’s the thing that we’d all have to negotiate and work together.”
“And I think in the “enhance capabilities for Aboriginal people” we also want people to recognize Aboriginal people have capabilities and sometimes we need to enhance the non-Indigenous or even the academic”
“Firstly, sovereignty of data. In the past, data after it has been collected from the community is sent off and they only hear about it again in published research often presenting them as ‘others’. A keeping place of knowledge would be useful for mob. For example communities with a community research panel.”
3.2.5. Stakeholder Feedback on the Theme: Inclusive Partnerships
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- Foster a collaborative approach;
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- Support self-determination and equity for First Nations Australians;
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- Build sustained relationships;
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- Ensure transparency and accountability;
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- Create a shared space for two-way learning.
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- An overview of the stakeholder feedback on this theme and its sub-themes is described below.
“I think I’m always like the old adage of, you know, working with our mob, you know, you do people before you do work. So, you know, taking that time down get to know who you’re working with the community.”
“Underpinning that is the respect for relationships and trust and listening to and taking the lead from the First Nations peoples and those involved, rather than just saying, ‘well, okay, I’ve sought ethical approval’ or ‘I’ve ticked these boxes.’ That’s really respecting me, the sort of fabric that should underpin all of that.”
“…research isn’t necessarily the first thing that’s done… there’s a need for a period, you know… to get to know each other or to, you know, to break the ice, or to establish relationships in ways that aren’t necessarily research focused.”
“…getting to know you face to face might be something to highlight… so rather than worrying about not doing the wrong thing or doing the right thing during the research.”
“…people get to know to know each other and my sense is that that can help… But that happens, you know, before the business happens.”
“You know, a lot of institutions decided that they’ve got power to make decisions for us and things. So making sure that power balance has shifted to the community being in the front seat and driving; that they’ve got the power to make calls.”
“So it’s about acknowledging that when you’re coming into this space that those partnerships that you’re working within might have power imbalances historically and in the present day. And so, making sure that the power is with [community] to make those decisions.”
“…a partnership with two-way learning is good, but I think we need to recognize that Aboriginal communities have a whole range of capabilities… I think when we look at work like this, best practice is to recognize that Aboriginal and Torres communities have a whole range of capabilities that can benefit the researcher.”
“…taking the time to have those yarns, if that’s what that community needs... And when you talk to them, and everybody feels important, everybody thinks alright, yeah.”
“…with my [communities], I review that every year or two… what do I need to be doing? What do I need to be sharing? How do I need to work with you? but no one actually cares to track it, so they can be like, “Oh no, I sent all of them minutes and the final papers to communities and they’re up to date”, but it’s not meaningful.”
“So taking the time to have those yarns, if that’s what that community needs? And when you talk to them and, and everybody feels important, everybody thinks alright, yeah. They’re, actually, genuinely looking after my welfare and I’m participating because I understand how it’s going to benefit me.”
“…’grassroots accountability’—needs to be a reflexive process with checks along the way.”
3.2.6. Stakeholder Feedback on the Theme: Evidence-Based Decision Making
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- Strive for evidence-based rigour;
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- Build in evaluation and monitoring processes;
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- Ensure the outcomes are co-designed.
“…the point about ‘evidence-based decision making’, it kind of creates a little bit of tension you know; where ‘shared decision making’ is actually a better statement, because then that could include ‘evidence based’, but it comes from, you know, that negotiation… for and benefit to the community.”
“Is ‘evidence-based decision making’ the right name for that... maybe not because I mean to me, it’s like, ‘What? What does that mean?’”
“…how do we acknowledge the Indigenous world view and Indigenous knowledge within ‘evidence based decision making’ in this co-design process? Because I think it’s just as important as what the literature says.”
“…it’s not just about ‘evidence based’ from what publications say. It’s about ‘evidence based’ from a community perspective about how things work and the way we should be doing things.”
“I think some way to kind of bring it back to kind of transparency around what is co-design, how you did it. Like I feel like when we talk about like the methods, I think people need to be transparent about their methods.”
“…People say, “Oh, well, I co-designed it, then I went off and did this” You didn’t co-design the study, you didn’t co-design the outcome measures, and what data collection tools you were using and all of those things. You co-designed maybe the resources, or a component of a study, rather than a whole study.”
“We’ve got to have really clear and agreed and documented processes to ensure that what we’re doing is clear. It’s not being hidden behind anything, and we’re really accountable that way. You know, we’re respectful and responsible to one another in this co-design approach.”
“We talk, talk, talk, but we don’t actually really develop and do okay… when are we going to actually get to do something like putting in solutions right? So making sure that co-design has a real action, an outcome.”
“So, you know, we’ve got so much data on a lot of it. And but I guess it’s just about not reinventing anything and not coming up with something that is not going to be able to be developed… or we keep going around in a circle type of thing.”
“…making sure that’s measurable, tangible, like you can touch it and measure it.”
“I fight with people all the time “no this is rigorous, this is the most rigorous way to test this” and I say yeah but if it’s not appropriate for Aboriginal people, then it’s not the most rigorous way to test something.”
“I’ve had a conversation… where we’re talking about RCTs [Randomised Controlled Trials], and like obviously everyone wants an RCT, and she said ‘oh, I have this beautiful step wedge plan and it’s so beautiful’ and when she went to her community partners, and they said ‘uh uhhhh’... So sometimes you’ve got to pull some of that rigor that you want away because it’s about co-design, it’s about being appropriate for our community.”
3.2.7. Final Set of Key Principles and Best Practices for Co-Design
4. Discussion
Strengths and Weaknesses of the Study
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
Appendix A. Yarning Guide
- FOR EACH THEME IDENTIFIED IN COMPREHENSIVE REVIEW.
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- Read out theme name, description and each sub-theme
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- Explore stakeholders views on:
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- First thoughts/reactions
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- Wording and description of theme
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- Thoughts about the theme
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- Do these sub-themes fit in this theme?
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- Are any themes more/most important?
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- Are any themes not important?
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- Are there any sub-themes that are missing from this theme?
- Show slide with all 6 themes and seek final comments and feedback.
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% | ||
---|---|---|
Sex | ||
Male | 8 | 32% |
Female | 17 | 68% |
Indigenous Identification | ||
Indigenous | 18 | 72% |
Non-Indigenous | 7 | 28% |
Stakeholder Group | ||
Patient | 5 | 20% |
Research | 10 | 40% |
Policy/Health Service and Provision | 10 | 40% |
State | ||
NSW | 11 | 44% |
QLD | 5 | 20% |
NT | 2 | 8% |
WA | 2 | 8% |
VIC | 3 | 12% |
SA | 2 | 8% |
Principle 1: First Nations leadership Principle overview: Authentic and appropriate First Nations leadership must be embedded within the co-design approach. The nature and function of this leadership must be determined with the community and should reflect the community’s structure and interests. First Nations leadership needs to begin during the conception stages of the project and extend beyond the completion of the project. |
Principle 1 Best Practices:
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Principle 2: Culturally grounded approach Principle overview: The strength and diversity of First Nations culture must be reflected in the co-design project and approach. A continuous process of striving for cultural competency and self-reflection by non-Indigenous people involved in the project is essential. |
Principle 2 Best Practices:
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Principle 3: Respect Principle overview: The expertise, experience and time of First Nations people and organisations must be respected and recompensed to ensure equity for all involved in the co-design process. Approaches must incorporate flexibility and must be familiar and engaging for First Nations Australians to feel comfortable and welcome to lead and participate in the process. |
Principle 3 Best Practices:
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Principle 4: Benefit to community Principle overview: Co-design projects must aim to serve First Nations Australians and communities above all else. The project conception, design, processes and outcomes must provide timely, tangible and sustainable benefits that are valued by the community. |
Principle 4 Best Practices:
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Principle 5: Inclusive partnerships Principle overview: Fostering and maintaining equitable and collaborative relationships between all participants is central in driving effective co-design projects. Establishing appropriate communication channels and conflict resolution processes, formulated by and with community, that maintains trust and supports authentic partnerships is imperative. |
Principle 5 Best Practices:
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Principle 6. Transparency and evaluation Principle overview: Transparency in all aspects of the co-design project is essential. Accountability to First Nations leaders must be formalised and embedded into co-design projects. Embedding monitoring and evaluation throughout the co-design process using agreed performance indicators that facilitate transparency and accountability to community is essential. |
Principle 3 Best Practices:
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Share and Cite
Anderson, K.; Gall, A.; Butler, T.; Ngampromwongse, K.; Hector, D.; Turnbull, S.; Lucas, K.; Nehill, C.; Boltong, A.; Keefe, D.; et al. Development of Key Principles and Best Practices for Co-Design in Health with First Nations Australians. Int. J. Environ. Res. Public Health 2023, 20, 147. https://doi.org/10.3390/ijerph20010147
Anderson K, Gall A, Butler T, Ngampromwongse K, Hector D, Turnbull S, Lucas K, Nehill C, Boltong A, Keefe D, et al. Development of Key Principles and Best Practices for Co-Design in Health with First Nations Australians. International Journal of Environmental Research and Public Health. 2023; 20(1):147. https://doi.org/10.3390/ijerph20010147
Chicago/Turabian StyleAnderson, Kate, Alana Gall, Tamara Butler, Khwanruethai Ngampromwongse, Debra Hector, Scott Turnbull, Kerri Lucas, Caroline Nehill, Anna Boltong, Dorothy Keefe, and et al. 2023. "Development of Key Principles and Best Practices for Co-Design in Health with First Nations Australians" International Journal of Environmental Research and Public Health 20, no. 1: 147. https://doi.org/10.3390/ijerph20010147