. 2024 Jan 9;38(11):2187–2194. doi: 10.1038/s41433-023-02881-6

Table 2.

Summary of themes with examples of associated participant quotes.

Overlap with ethical requirements	Challenges with implementation	Perspective shift to genuine and effective research
• “In the interests of concise reporting, I think this can be assumed as part of Ethics approval.” • “Again, I think this is something covered in Ethics approval and not needed in the manuscript” • “I have reported the descriptions of how Indigenous stakeholders were involved in the research processes in ethics application, but not in the peer-reviewed report yet!” • “I believe that the strategies used to encourage the participation of Indigenous people in studies that benefit them should be described in the study or research protocols and reviewed by the ethics committee, but I do not think it is necessary to report it in the final report or publication” • “I’m not sure that formal Indigenous ethics exist beyond the general ethics. I’m not sure I’d know what formal pathways to do down to ensure I was getting all the appropriate approvals. If there are ones I don’t know about, I would like to know about them.”	Knowledge gaps: • “This seems important, but like ‘governance’ it is unclear to me how to do this in future.” • “I’m not totally sure what these are or how to find out about them.” • “Unsure what professional development opportunities would be available.” Does it apply to me?: • “it is not relevant to my research” • “Due to the nature of the research carried out with the Indigenous population, it has never been an objective to identify opportunities to strengthen the capacity of association with the Indigenous parties” • “A large proportion of studies on eye health in Indigenous communities are observational epidemiological studies that do not generate intellectual property or have direct relevance to commercial or discovery science projects, and this item may have very little relevance.” • “I’m not sure I do the type of research that would lend itself to future analysis. Adding in the consent for it, when I can’t see it happening seems maybe unnecessary?” • “Might depend on the type of research / the scale of Indigenous involvement (e.g. Māori participants within large study vs Māori focus)” Is the bar too high? (research structure might need to change – allowing time/resource for this) • “Clinical research requires ample paperwork before it can be commenced. Adding another layer is likely to discourage already over-burdened researchers, especially early career without significant financial support or mentorship” • “Although having a formal agreement is ideal, it can be a long bureaucratic process that can cause delays in the implementation of the research projects.” • “There is a lot of work that needs to be done to shift practice in this area - it requires both cultural governance and advocacy from allies to occur. From experience this requires specific knowledge and skills e.g. in law and intellectual property to ensure protection of Indigenous knowledges and benefit for Indigenous peoples and places. Research teams and projects don’t necessarily have budget to for these tasks either, despite their importance” Research structure, review and publication might need to change: • “Western lens is often described by degrees etc which is often communicated in a paper however, especially with qualitative research, a standpoint is much broader, this later can be challenging when you are working with word constraints.” • “The finer detail of this information will be available upon request or as supplementary material, depending on the journal or means of publication/dissemination.” • “sometimes it is difficult to get this across in peer-reviewed journals where the editors don’t necessarily understand” • “given the word limits imposed on authors by journals, it may be difficult to prioritise including the details of this process of dissemination of findings to the relevant Indigenous stakeholders in a paper, as this may be at the expense of some other details that are more relevant to the research itself” *What might help (among participants saying they were unlikely to report an item in future)**: • “More information about these agreements” • “Organisation support” / “Recommendations on what the research team can undertake in terms of PD opportunities” • “Understanding when this should and shouldn’t be included” / “An example of how this could be included in a way that made sense in the reporting could help me see how this could fit in” • “If the relevant guidelines/principles are included within CONSIDER, and updated annually, perhaps that would work best as a checklist.”	• “Aboriginal Community Controlled Health Organisations (ACCHOs) were not always representative of the needs, perspectives, priorities of the peoples and places we were working with. Since then, my work has taken a different approach to governance that is centred on cultural authority e.g. cultural governance - which ensures that traditional cultural knowledge holders in the place where the research is being conducted are the ones who govern the research and approve key decisions on all aspects of the study” • “Because all my work is led or in collaboration with Indigenous leaders, the research analysis and interpretation are strength-based and inclusive of Indigenous values” • “We collaborate with the community, so eventually they will have ownership of the data to create eye care programs that are unique to their communities, preventing blindness and encouraging eye health” • “I undertook cultural awareness training, but my real learning came through building relationships with cultural knowledge holders” • “We still have examples of neo-colonial capacity building projects - how can these be avoided?” • “I always frame this as reciprocal -e.g.knowledge exchange because it is always reciprocal!” • “We have a high level of expertise that allows us to establish good relations with the community and positively affect the territories.” • “Feedback to the community is integral to our work, and it is how we have been able to translate research findings relatively quickly. For example, after research found that there were high rates of depression and suicide in a community, the research team set a chain of events that increased the necessary support services.” • “Community meetings, “mingas”, fairs and collective meetings were held to socialize the results of the research. These were attended by Indigenous people and decision makers. Likewise, community information dissemination strategies were generated, using local indigenous radio stations” • “To support the right to self-determination, the Indigenous communities involved in the research should advise how they wish for results to be communicated and shared and they should be supported to implement the findings in a way that is most relevant to their cultural, spiritual, psychological, environmental and physical needs.” • “Once the results are obtained, a meeting is convened with the community so that they know the analysis done and so that they can contribute to it, and these comments are integrated into the final version that is delivered to the health authority and with which a socialization is made.” • “In work I have led all dissemination was collaborative and included Aboriginal community based researchers as authors who took the lead in specific and place-based report backs to Aboriginal partner organisations.”

Overlap with ethical requirements

Challenges with implementation

Perspective shift to genuine and effective research

• “In the interests of concise reporting, I think this can be assumed as part of Ethics approval.”

• “Again, I think this is something covered in Ethics approval and not needed in the manuscript”

• “I have reported the descriptions of how Indigenous stakeholders were involved in the research processes in ethics application, but not in the peer-reviewed report yet!”

• “I believe that the strategies used to encourage the participation of Indigenous people in studies that benefit them should be described in the study or research protocols and reviewed by the ethics committee, but I do not think it is necessary to report it in the final report or publication”

• “I’m not sure that formal Indigenous ethics exist beyond the general ethics. I’m not sure I’d know what formal pathways to do down to ensure I was getting all the appropriate approvals. If there are ones I don’t know about, I would like to know about them.”

Knowledge gaps:

• “This seems important, but like ‘governance’ it is unclear to me how to do this in future.”

• “I’m not totally sure what these are or how to find out about them.”

• “Unsure what professional development opportunities would be available.”

Does it apply to me?:

• “it is not relevant to my research”

• “Due to the nature of the research carried out with the Indigenous population, it has never been an objective to identify opportunities to strengthen the capacity of association with the Indigenous parties”

• “A large proportion of studies on eye health in Indigenous communities are observational epidemiological studies that do not generate intellectual property or have direct relevance to commercial or discovery science projects, and this item may have very little relevance.”

• “I’m not sure I do the type of research that would lend itself to future analysis. Adding in the consent for it, when I can’t see it happening seems maybe unnecessary?”

• “Might depend on the type of research / the scale of Indigenous involvement (e.g. Māori participants within large study vs Māori focus)”

Is the bar too high? (research structure might need to change – allowing time/resource for this)

• “Clinical research requires ample paperwork before it can be commenced. Adding another layer is likely to discourage already over-burdened researchers, especially early career without significant financial support or mentorship”

• “Although having a formal agreement is ideal, it can be a long bureaucratic process that can cause delays in the implementation of the research projects.”

• “There is a lot of work that needs to be done to shift practice in this area - it requires both cultural governance and advocacy from allies to occur. From experience this requires specific knowledge and skills e.g. in law and intellectual property to ensure protection of Indigenous knowledges and benefit for Indigenous peoples and places. Research teams and projects don’t necessarily have budget to for these tasks either, despite their importance”

Research structure, review and publication might need to change:

• “Western lens is often described by degrees etc which is often communicated in a paper however, especially with qualitative research, a standpoint is much broader, this later can be challenging when you are working with word constraints.”

• “The finer detail of this information will be available upon request or as supplementary material, depending on the journal or means of publication/dissemination.”

• “sometimes it is difficult to get this across in peer-reviewed journals where the editors don’t necessarily understand”

• “given the word limits imposed on authors by journals, it may be difficult to prioritise including the details of this process of dissemination of findings to the relevant Indigenous stakeholders in a paper, as this may be at the expense of some other details that are more relevant to the research itself”

What might help (among participants saying they were unlikely to report an item in future)*:

• “More information about these agreements”

• “Organisation support” / “Recommendations on what the research team can undertake in terms of PD opportunities”

• “Understanding when this should and shouldn’t be included” / “An example of how this could be included in a way that made sense in the reporting could help me see how this could fit in”

• “If the relevant guidelines/principles are included within CONSIDER, and updated annually, perhaps that would work best as a checklist.”

• “Aboriginal Community Controlled Health Organisations (ACCHOs) were not always representative of the needs, perspectives, priorities of the peoples and places we were working with. Since then, my work has taken a different approach to governance that is centred on cultural authority e.g. cultural governance - which ensures that traditional cultural knowledge holders in the place where the research is being conducted are the ones who govern the research and approve key decisions on all aspects of the study”

• “Because all my work is led or in collaboration with Indigenous leaders, the research analysis and interpretation are strength-based and inclusive of Indigenous values”

• “We collaborate with the community, so eventually they will have ownership of the data to create eye care programs that are unique to their communities, preventing blindness and encouraging eye health”

• “I undertook cultural awareness training, but my real learning came through building relationships with cultural knowledge holders”

• “We still have examples of neo-colonial capacity building projects - how can these be avoided?”

• “I always frame this as reciprocal -e.g.knowledge exchange because it is always reciprocal!”

• “We have a high level of expertise that allows us to establish good relations with the community and positively affect the territories.”

• “Feedback to the community is integral to our work, and it is how we have been able to translate research findings relatively quickly. For example, after research found that there were high rates of depression and suicide in a community, the research team set a chain of events that increased the necessary support services.”

• “Community meetings, “mingas”, fairs and collective meetings were held to socialize the results of the research. These were attended by Indigenous people and decision makers. Likewise, community information dissemination strategies were generated, using local indigenous radio stations”

• “To support the right to self-determination, the Indigenous communities involved in the research should advise how they wish for results to be communicated and shared and they should be supported to implement the findings in a way that is most relevant to their cultural, spiritual, psychological, environmental and physical needs.”

• “Once the results are obtained, a meeting is convened with the community so that they know the analysis done and so that they can contribute to it, and these comments are integrated into the final version that is delivered to the health authority and with which a socialization is made.”

• “In work I have led all dissemination was collaborative and included Aboriginal community based researchers as authors who took the lead in specific and place-based report backs to Aboriginal partner organisations.”