You are here

  • Home
  • Archive
  • Volume 13, Issue 2
  • Murru Minya–informing the development of practical recommendations to support ethical conduct in Aboriginal and Torres Strait Islander health research: a protocol for a national mixed-methods study

Article Text

Article menu
Public health
Protocol
Murru Minya–informing the development of practical recommendations to support ethical conduct in Aboriginal and Torres Strait Islander health research: a protocol for a national mixed-methods study
  1. Romany McGuffog1,2,
  2. Catherine Chamberlain3,4,
  3. Jaqui Hughes5,
  4. Kelvin Kong1,6,
  5. Mark Wenitong7,
  6. Jamie Bryant1,2,
  7. Alex Brown8,9,
  8. Sandra J Eades10,
  9. Kalinda E Griffiths11,
  10. Felicity Collis1,2,
  11. Breanne Hobden2,12,
  12. Peter O'Mara1,
  13. Tanika Ridgeway1,
  14. Maggie Walter13,
  15. Michelle Kennedy1,2
  1. 1School of Medicine and Public Health, The University of Newcastle, Callaghan, New South Wales, Australia
  2. 2Hunter Medical Research Institute, The University of Newcastle, New Lambton, New South Wales, Australia
  3. 3Judith Lumley Centre, School of Nursery and Midwifery, La Trobe University, Melbourne, Victoria, Australia
  4. 4Centre for Health Equity, School of Population and Global Health, The University of Melbourne, Melbourne, Victoria, Australia
  5. 5Rural and Remote Health, College of Medicine and Public Health, Flinders University, Nhulunbuy, Northern Territory, Australia
  6. 6ENT Department, Hunter Valley Private Hospital, Newcastle, New South Wales, Australia
  7. 7Lowitja Institute, Carlton, Victoria, Australia
  8. 8Indigenous Genomics, Australian National University, Canberra, Australian Capital Territory, Australia
  9. 9Telethon Kids Institute, Nedlands, Western Australia, Australia
  10. 10Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne, Melbourne, Victoria, Australia
  11. 11Centre for Big Data Research, University of New South Wales, Sydney, New South Wales, Australia
  12. 12Health Behaviour Research Collaborative, School of Medicine and Public Health, The University of Newcastle, Callaghan, New South Wales, Australia
  13. 13School of Social Sciences, University of Tasmania, Hobart, Tasmania, Australia
  1. Correspondence to Dr Romany McGuffog; romany.mcguffog{at}newcastle.edu.au

Abstract

Introduction Conducting ethical and high-quality health research is crucial for informing public health policy and service delivery to reduce the high and inequitable burden of disease experienced by Aboriginal and Torres Strait Islander people. Ethical guidelines and principles specifically for health research with Aboriginal and Torres Strait Islander people have been developed for use since 1987. However, there has been limited examination of how these are being applied to the conduct of research.

Methods and analysis Murru Minya will be a large-scale national study to examine the implementation of ethical processes in Aboriginal and Torres Strait Islander health research. A mixed-methods design will be used in four baarra (steps). The first three baarra will collect knowledge, experiences and wisdom from three key groups: Aboriginal and Torres Strait Islander communities, research academics, and Human Research Ethics Committees using online surveys, yarning, and semistructured interviews. This knowledge will inform the final baarra of developing a set of practical recommendations to support ethical conduct in Aboriginal and Torres Strait Islander health research into the future.

Ethics and dissemination Ethical approval for this research project has been granted by National, State and Territory Human Research Ethics Committees. This research has been developed in collaboration with Aboriginal and Torres Strait Islander researchers, Aboriginal Community Controlled Health Organisation representatives, Aboriginal community members, the National Health Leadership Forum, and Aboriginal and Torres Strait Islander research team. The knowledge translation plan will be integrated and revised throughout the project as partnerships and engagement with Aboriginal and Torres Strait Islander communities continue. All findings will be shared with peak Aboriginal research bodies and Aboriginal and Torres Strait Islander communities in ways that are meaningful to them.

  • PUBLIC HEALTH
  • QUALITATIVE RESEARCH
  • STATISTICS & RESEARCH METHODS
http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

https://doi.org/10.1136/bmjopen-2022-067054

Statistics from Altmetric.com

    Request Permissions

    If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.

    STRENGTHS AND LIMITATIONS OF THIS STUDY

    • Murru Minya will be the first national review of experiences with Aboriginal and Torres Strait Islander health research implementation, led by Aboriginal and Torres Strait Islander researchers.

    • The mixed-methods design allows for comprehensive insight into Aboriginal and Torres Strait Islander health research, across various stakeholders (Aboriginal and Torres Strait Islander communities, academics and Human Research Ethics Committee members) to inform future practice.

    • Murru Minya upholds Indigenous governance, provided by the National Health Leadership Forum and an Aboriginal and Torres Strait Islander research team.

    • Murru Minya is not intended to be representative; the aim of the study is to understand the ethical conduct of research across diverse groups and experiences.

    • Yarning circles with communities and Human Research Ethics Committee members may be impacted by COVID-19.

    Introduction

    Epistemologies, or systems of knowledge, that are privileged in euro-centric western institutions including academic journals, universities and government agencies have caused harm to Aboriginal and Torres Strait Islander people.1–3 Since colonisation, research has been used as a tool to dehumanise Aboriginal and Torres Strait Islander people under the false narrative of Terra Nullius.4–6 There is ongoing evidence of contemporary unethical research conducted on Aboriginal and Torres Strait Islander peoples, such as taking samples of children’s blood, without consent, to measure and monitor health conditions.7 Such research has largely excluded Aboriginal and Torres Strait Islander peoples’ oversight and guidance, which is a likely factor for the limited improvements in the health and well-being of Aboriginal and Torres Strait Islander people to date.2

    The establishment and implementation of ethical frameworks and guidelines have attempted to ensure Aboriginal and Torres Strait Islander values are upheld in research. In 1987, The National Aboriginal & Islander Health Organisation developed the first guidelines on ethical responsibilities in Aboriginal and Torres Strait Islander health research.3 The National Health and Medical Research Council’s (NHMRC) Values and Ethics from 2003 replaced the 1991 document Guidelines on ethical matters in Aboriginal and Torres Strait Islander Health Research.8 In 1999, the New South Wales Aboriginal Health and Medical Research Council (AH&MRC) produced its first Guidelines for Research into Aboriginal Health. Since this time, national and state-based ethical research guidelines have been published9–12 and reviewed.13 These ethical guidelines represent collaborative endeavours that involved researchers, Aboriginal and Torres Strait Islander community members and peak bodies. An example of a peak body, or leading body, in Aboriginal health includes the National Aboriginal Community Controlled Health Organisation, who represent 144 Aboriginal Community Controlled Health Organisations (ACCHOs) across the country, and acts to provide advice on community-developed and driven health solutions to the federal government. Concurrently with the development of guidelines, Aboriginal-specific state-based Human Research Ethics Committees (HRECs), such as the Western Australian Aboriginal Health Ethics Committee, have been established and registered with NHMRC to review research and ensure compliance to the above-mentioned guidelines.14

    All guidelines are based on the fundamental principles that research must be safe, respectful, responsible, high quality and of benefit to Aboriginal and Torres Strait Islander people.8 In 2019, the Australian Institute of Aboriginal and Torres Strait Islander Studies (AIATSIS) undertook a comprehensive review of the Guidelines for Ethical Research in Australian Indigenous Studies 2012.10 15 The review’s objective was to develop a deeper understanding of ethical conduct via a Code of Ethics embedded in Aboriginal and Torres Strait Islander worldviews.15 The review process raised concerns regarding compliance, enforceability and institutional responsibility for the Code of Ethics.15

    A previous evaluation of NHMRC ethical research guidelines, conducted by members of the research team, asserted that ‘Aboriginal influence and practices (ie, right way to research) can improve the entire sector (research)’.13 A growing cohort of Aboriginal and Torres Strait Islander researchers continue to explore areas of research design, development and implementation in an effort to improve research conduct. Examples of such bodies of work include research principles for Aboriginal and Torres Strait Islander health research,16 assessing impact,2 articulating ethical practice in partnership with communities,17–22 Aboriginal governance,20 policy,23–25 Indigenous methodologies,26 27 appropriate research reporting28 and the use of data.29 30 While significant efforts have been placed on developing culturally appropriate research guidelines for Aboriginal and Torres Strait Islander health in Australia, there is limited evidence about how ethics processes have been operationalised in research practice. This knowledge gap is crucial to improving the quality and quantity of research to achieve health equity.

    To date, there has been no comprehensive evaluation of the implementation of ethical guidelines in Australia. It is therefore unknown how the principles for the ethical research conduct have been implemented by researchers, the processes that support and/or impede the implementation of ethical principles, and whether research experiences of Aboriginal and Torres Strait Islander communities have improved as result of these guidelines. The Closing the Gap campaign has called for structural reform, including an Aboriginal and Torres Strait Islander-led research agenda.31 It is therefore imperative and timely to reflect on how Aboriginal and Torres Strait Islander health research has been, and continues to be, conducted. A multifactorial investigation of influences on research conduct, which privileges the voices and experiences of Aboriginal and Torres Strait Islander people and communities, is needed. This investigation will lead to the development of research principles and practice recommendations.

    Objectives

    This project involves a comprehensive review of Aboriginal and Torres Strait Islander health research, using a conceptual framework Yindymarra, to develop a set of practical recommendations for ethical research adherence (see figure 1). Yindymarra is a Wiradjuri cultural practice meaning ‘to conduct yourself with honour and respect, to do things slowly and thoughtfully’. The lead researcher is a Wiradjuri woman and has developed the conceptual framework for this project building on key guidelines for Aboriginal and Torres Strait Islander health research conduct, depicted in the outside circles. Aboriginal ontology (being), epistemology (knowing) and axiology (doing) are privileged through an Indigenous standpoint and research methodologies32 33 as depicted in the middle circle. The individual studies of this project are represented in the centre. This project acknowledges the importance of prior ethical guidelines and the substantial work that has contributed to their development and refinement. This project, through Yindymarra, will winhanga-duri-nya (reflect) on how these ethical guidelines have been used in research processes. Through the development of recommendations, more informed research planning can occur, which will maximise efficiency in research consultation and implementation, increasing the potential for positive research outcomes for Aboriginal and Torres Strait Islander people.

    Figure 1
    Figure 1

    Yindymarra conceptual framework for the proposed research. AH+MRC, Aboriginal Health and Medical Research Council.

    The project will undertake four baarra (steps) to achieve gulbnha (knowledge) (see figure 2). The first three baarra will collect knowledge, experiences and wisdom from three key groups: Aboriginal and Torres Strait Islander communities, research academics and HRECs, to inform the final baarra of developing a set of practical recommendations for the future.

    Figure 2
    Figure 2

    Overview of baarra (steps).

    This project aims to:

    1. Investigate ACCHOs’ involvement in health research and identify, through the voices and experiences of Aboriginal and Torres Strait Islander communities, their perceptions of ethical practice.

    2. Explore, among academics conducting Aboriginal and Torres Strait Islander health research, their perceptions of the barriers and enablers to conducting Aboriginal and Torres Strait Islander health research, and adhering to ethical principles.

    3. Understand, from the perspectives of HRECs, their processes for overseeing and approving Aboriginal and Torres Strait Islander health research and their perceptions of researcher adherence to ethical principles.

    4. Develop a set of practical recommendations, which are nationally endorsed by Aboriginal and Torres Strait Islander health experts, researchers, and Aboriginal and Torres Strait Islander communities, to support the implementation of high-quality and ethical Aboriginal and Torres Strait Islander health research.

    Methods

    Research team

    Research methodology and research team members’ worldviews influence perspectives, values, how the Murru Minya study was created, and how it will be conducted, analysed and interpreted.34 35 The study was conceptualised and will be led by MK (Wiradjuri woman), in partnership with other Aboriginal and Torres Strait Islander researchers: AB, MW, JH, SJE, CC, MW, KK, PO and KEG who are located across the country. Our team brings decades of experience, expertise and recognised leadership in Aboriginal and Torres Strait Islander health and well-being. Our expertise includes, but are not limited to, maternal and reproductive health (CC, SJE), Aboriginal Community Controlled Health (MK, FC, PO, MW), risk factors and chronic disease (AB, SJE), renal care (JH), early intervention and hearing (KK, SJE, CC), epidemiology (KEG, SJE) and inequality (MW). Our team has expertise in scientific methods including data sovereignty and governance (KEG, MW), qualitative research (MK, CC), quantitative research (JB, MW, BH, KEG, CC, KK, AB, SJE), clinical research (PO, AB, JH, KK), co-design interventions (CC, JH, MK, SJE) and implementation science (CC, MK, JB, BH, KG), as well as extensive expertise in developing and evaluating Aboriginal and Torres Strait Islander health research strategies, evaluations and frameworks. This project is Aboriginal and Torres Strait Islander led and provides guidance for non-Indigenous researchers working on the project (RM, JB, BH).

    Patient and public involvement

    Oversight of the research will be provided by the National Health Leadership Forum (NHLF) and an Aboriginal and Torres Strait Islander investigative team. The NHLF was considered the most appropriate governance committee for this project as they represent a broad scope of health professions and are inclusive of the Chief Executive Officers (CEOs) of peak bodies. One key priority of the NHLF is accountability within the health system, which includes research, ethics and funding. The NHLF will provide national project governance to ensure that the research is appropriate and meaningful to all of the Aboriginal and Torres Strait Islander communities involved. Consultation with the NHLF will occur biannually throughout the project (from 2021 to 2024).

    Study components

    A mixed-methods design will be used incorporating three baarra, each involving a survey and semistructured interviews and/or yarning circles. The data collected in phase 1 will inform the development of practical recommendations in baarra 4. The study period is from June 2021 through to December 2024.

    Measure development

    The surveys and interview/yarning circle guides were developed following the conduct of a review of the peer-reviewed literature, review of ethical guidelines and input from the Aboriginal and Torres Strait Islander research team and ACCHO representatives. Survey items were pilot tested and amended according to Aboriginal and Torres Strait Islander researchers and communities’ feedback to ensure they were culturally appropriate and acceptable. The contents of the surveys and interview guides are described below (within each baarra). For copies of the surveys and interviews, please see online supplemental file 1.

    An overview of the currently available ethical guidelines for researchers working in Aboriginal and Torres Strait Islander health research and their key principles can be found in table 1. The research team explored the key areas for investigation across these ethical guidelines relevant for this research project and established 13 key areas used in the first three baarra. The key areas are outlined in table 2 with reference to the principles in each of the four ethical guidelines. Each survey, interview and yarning circle will explore these key areas from the perspective of communities, researchers and ethics committee members.

    View this table:
    Table 1

    Ethical guidelines for Aboriginal and Torres Strait Islander research

    View this table:
    Table 2

    Key areas for Aboriginal and Torres Strait Islander engagement in health research

    COVID-19 and potential impact

    All aspects of the research will be conducted in line with community protocols. It is anticipated that the interviews for baarra 2 will be conducted over zoom and have minimal risk of impact. Baarra 1 and 3 will have the opportunity to conduct any yarning circles and interviews over zoom if this is the preferred method due to COVID-19 outbreaks. Any face-to-face meeting, interview or yarn will follow university and community protocols. The impact of COVID-19 on researchers’ conduct of research in 2020–2022 will be considered and navigated as guided by our participants.

    Baarra 1: exploration of Aboriginal and Torres Strait Islander communities’ experience with health research

    Baarra 1 will involve: (1) an online cross-sectional survey of CEOs and/or senior management of ACCHOs; and (2) qualitative yarning circles with relevant community stakeholders, including ACCHO staff, patients and community members.

    ACCHOs are community-driven, primary healthcare providers for Aboriginal and Torres Strait Islander people. ACCHOs, through their provision of holistic, comprehensive and culturally informed care, highlight the social determinants of health and health inequity experienced by Aboriginal and Torres Strait Islander communities.36 They are also a primary employer of Aboriginal and Torres Strait Islander people and regularly sought to participate in the implementation of Aboriginal and Torres Strait Islander health research.

    Survey

    All ACCHOs in Australia are eligible to participate. The CEO and/or senior management of various ACCHOs will receive an email and hard copy invitation including a Participant Information Sheet, a link to the online survey, hard copy survey, a brochure with information on the project and links to project website for more information. The survey will also be promoted through our Murru Minya website. Additionally, we will do a targeted recruitment through health services, since health services play a critical role in improving the health and well-being of Aboriginal and Torres Strait Islander communities. Participants will be asked to provide descriptive characteristics of their practice including type of service, area postcode and the importance of different types of engagement with research (based on the key areas identified in table 2). A previous state-based study obtained consent rates of 66% when recruiting Aboriginal Community Controlled Health Services.37 Based on this study, we anticipate a minimum of 30 and up to 90 ACCHOs to consent to the survey component of the study.

    Yarning circles

    At the end of the survey, participants will be asked to indicate their interest in hosting yarning circle/s in their community. This will include separate yarns for staff and Aboriginal and Torres Strait Islander patients/community members. Yarning will be led by Aboriginal and Torres Strait Islander members of the research team in partnership with the consenting Aboriginal service. The yarning process will incorporate social yarning, research topic yarning, collaborative yarning and concluded with sharing a meal.26 Only the collaborative yarning process will be used for data collection, with social and research topic yarning used to build relationships and trust with the communities involved in the study and obtain informed consent. Up to 20 ACCHOs will be recruited to participate in yarning circles, with up to three from each state or territory. If more than three ACCHOs within each state/territory express interest, the research team will seek to balance urban and rural/remote communities. With 5–10 staff and 10 community members at each service, there will be a maximum of 400 participants.

    Baarra 2: academic’s perceptions of undertaking ethical research

    Baarra 2 will involve an (1) online cross-sectional survey and (2) semistructured qualitative interviews with researchers (including Indigenous researchers and non-Indigenous researchers) who have conducted and/or published research in Aboriginal and Torres Strait Islander health.

    Survey

    All researchers who self-identify as working in Aboriginal and Torres Strait Islander health are eligible to participate. Potential participants will be identified through publications in Aboriginal and Torres Strait Islander health using publicly available contact information listed on publications. The publications are based on publications in Aboriginal and Torres Strait Islander health reported in a recent review,38 from 2015 to present. The survey will also be promoted through peak partnerships such as the Lowitja Institute, NHMRC, AH&MRC, and the research team’s networks and social media channels encouraging all researchers working in Aboriginal and Torres Strait Islander health research to participate. Participants will be asked to provide demographics, descriptive characteristics of their research career and their experiences of the ethics process. Participants will also be asked about the (a) importance of different types of Aboriginal and Torres Strait Islander engagement with research, (b) how well they engage Aboriginal and Torres Strait Islander communities in their research, and (c) how well they perceive other researchers to engage Aboriginal and Torres Strait Islander communities in research (based on the key areas identified in table 2). A large sample of researchers will be recruited, with a minimum of 300 participants and a maximum of 2000 participants. A consent rate of 50% of those approached is expected based on previous studies among researchers using similar recruitment methods.39

    Interviews

    At the end of the survey, participants will have the option to indicate their interest in participating in a one-on-one interview. Participants who indicate their interest in participating in an interview will be purposively sampled to allow a diverse sample of researchers and experiences, including Indigenous researchers and non-Indigenous researchers, and individuals representing a variety of different career stages.

    Interviews will be guided by an interview schedule and will take approximately 30–60 min to complete. Questions will include perceptions of their research practice and experiences including perceived barriers or enablers for conducting ethical Aboriginal and Torres Strait Islander research. We will analyse the data in correspondence with ethical research guidelines and frameworks (see table 2). Interviews will be undertaken until saturation of themes is achieved, which is expected to require approximately 20–30 interviews.

    Baarra 3: the process of Aboriginal and Torres Strait Islander research from the perspective of HRECs

    To better understand the ethics process when conducting Aboriginal and Torres Strait Islander research, HREC members will be invited to participate in: (1) an online survey and (2) semistructured qualitative interviews in baarra 3.

    Survey

    Current and past members (within the last 5 years) of an NHMRC-approved HREC will be eligible to participate. HRECs will be contacted by the research team and asked to distribute invitations to participate to all current and past (in the last 5 years) committee members. Advertisement of the survey will also be provided through the Murru Minya website and partnered stakeholders (eg, the Lowitja Institute, National Aboriginal Community Controlled Health Organisation). Participants will be asked to provide demographics, descriptive characteristics of their ethics committee and their experiences of the ethics process. Participants will also be asked about the (a) importance of different types of Aboriginal and Torres Strait Islander engagement with research, and (b) how well they perceive researchers to engage Aboriginal and Torres Strait Islander communities in research (based on the key areas identified in table 2). There are currently 181 NHMRC-registered HRECs around Australia that will be invited to participated. A target sample of 100–500 participants is expected for the survey.

    Interviews and yarning circles

    At the end of the survey, participants will have the option to indicate their interest in participating in an interview or yarning circle (online or face to face). Recruitment will occur parallel to the survey data collection, including all interested participants to ensure all HREC members have the appropriate opportunity to be involved. We anticipate conducting yarning circles in two groups: (1) members from Aboriginal-specific ethics committees, (2) members from non-Aboriginal-specific committees. However, any participant may select one-on-one interviews if preferred. Twenty to 30 interviews or up to 10 yarning circles are expected to achieve adequate saturation of themes.

    Interviews will be guided by an interview schedule and yarning guide and will take approximately 30–60 min. Questions will include perceptions of research practice and experiences related to the ethics approval process and perceived barriers or enablers for conducting ethical Aboriginal and Torres Strait Islander research. We will analyse the data in correspondence with ethical research guidelines and frameworks (see table 2).

    Baarra 4: development of practical recommendations to support ethical research conduct

    Baarra 4 will encompass a round table consisting of the Aboriginal and Torres Strait Islanders, participating communities, peak bodies and other Indigenous academics to develop a list of recommendations to support ethical research conduct. All ACCHOs (including CEOs, practice managers and staff) engaged in baarra 1, Aboriginal and Torres Strait Islander health researchers engaged in baarra 2, ethics committee members engaged in baarra 3, members of the NHLF and key stakeholders identified through the ongoing consultation and engagement processes of the project will be invited to participate in the round table. The methods used to develop the recommendations will be developed in consultation during baarra 1–3.

    Analysis of baarra 1–3

    Quantitative data collected in the surveys will be summarised using counts and proportions. Logistic regressions will explore how characteristics of interest relate to survey outcomes. Interview and yarning circle data will be transcribed and analysed using NVivo V.12 software. Individual participants will have the option of receiving a written transcript of their responses prior to analysis and will be given the opportunity to edit their responses if they wish. Transcripts will be sent back to communities for approval before being included in the analysis. Two researchers (at least one Aboriginal) will independently code the qualitative data thematically using the developed Key Areas for Aboriginal and Torres Strait Islander Engagement in Health Research as a framework for analysis. Preliminary findings will be shared with the Aboriginal and Torres Strait Islander research team and NHLF for consideration. Once consensus of themes is reached by the research and advisory teams, feedback will be sought from all communities involved in the yarning circles. Data will be reported in line with community feedback to ensure voices are upheld with respect and integrity.

    Ethics and dissemination

    Ethics approvals

    This project has received ethics approval from the AH&MRC HREC (reference no. 1924/22), AIATSIS HREC (reference no. EO323-20220414) and University of Newcastle HREC (reference no. H-2022-0211). The study will be conducted in accordance with the: NHMRC Road Map II: A Strategic Framework for Improving the Health of Aboriginal and Torres Strait Islander People through Research; Values and Ethics: Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research; and Keeping research on track: A guide for Aboriginal and Torres Strait Islander peoples about health research ethics.

    Consent

    Participation in the Murru Minya project is voluntary and participants may withdraw from the study at any time. The study information statements provide contact details for the research team to answer any questions. For all data collection activities, potential participants will be provided with a plain-language Participant Information Sheet and given time to consider their participation. Participants will be required to provide written informed consent for all data collection activities in baarra 1–3. For the surveys, participants will be required to answer the consent form at the beginning of the survey. For the interviews/yarning circles, participants will provide written consent, but with the option of verbal consent if preferred (in line with the National Statement).

    Confidentiality

    Any planned or future use of data will present data only in de-identified and summary form and will adhere to strict security processes to ensure data privacy and confidentiality. The contact details asked at the end of the survey for interviews and yarning circles will not be linked with survey answers and will be deleted upon completion of data collection.

    Dissemination

    The project has been developed in line with principles of Indigenous data sovereignty, acknowledging the rights of Indigenous people to control the development and dissemination of data for and about them.40 All reporting of findings for this research will be subject to multilevel approvals including the Aboriginal and Torres Strait Islander research team which includes leaders in Indigenous data sovereignty.

    Murru Minya contracted an Indigenous media and marketing agency to create a website (www.murruminya.com.au) that embodies what the Murru Minya project stands for, transparent ethical research. The website was designed to provide updates for the community on the project and its findings. Knowledge translation between the research team and community was at the forefront of the website’s design, content and creation. Community members and the research team are featured in the images on the website, representing how Murru Minya will interact with communities around the country.

    An integrated knowledge translation plan will be developed in partnership with the Lowitja Institute that will ensure ongoing feedback to communities and knowledge translation activities are meaningful and impactful for the project. The practical recommendations derived in this study will be published, open access, in a peer-reviewed national journal and online with Lowitja. Once published, this will be circulated through peak Aboriginal and Torres Strait Islander and research bodies. The recommendations will be made freely available to all interested parties to appropriately distribute.

    Discussion and implications

    This research builds on the priorities from the NHMRC Road Map 3, to ‘improve the way all researchers work with Aboriginal and Torres Strait Islander people and communities; develop and/or strengthen research capabilities of communities, and enhance the rights of Aboriginal and Torres Strait Islander peoples as researchers, partners and collaborators in research’.41 Aboriginal and Torres Strait Islander communities have reported an overburden of research with little improvement to health outcomes experienced. Ethical guidelines outline the importance of research built on community priorities, reciprocal partnerships and benefit. Our team’s previous research found community reports of researchers showing insufficient regard for ethics processes for Aboriginal and Torres Strait Islander health research.13 The ways in which ethical guidelines are implemented are rarely reported in peer-reviewed literature; therefore, extensive national consultation is required to adequately address barriers and enablers in the uptake of ethical guidelines. Research quality and impact in Aboriginal and Torres Strait Islander health are aligned with ethical research conduct. Through privileging the voices and experiences of Aboriginal and Torres Strait Islander communities, this research has benefit to all those involved in Aboriginal and Torres Strait Islander health research including students, researchers, Aboriginal and Torres Strait Islander communities, peak bodies and funders. We acknowledge that Aboriginal and Torres Strait Islander peoples are diverse, and this study may not reflect the perspectives, experiences and recommendations of all peoples and communities. The research team includes both Aboriginal and Torres Strait Islander researchers located in all states and territories across the country with strong connections and working relationships with Aboriginal and Torres Strait Islander communities. The study design has carefully considered inclusive and culturally responsive research approaches to privilege diversity of our people and communities.

    Baarra 1 will be the first national exploration of community experiences with Aboriginal and Torres Strait Islander health research implementation. It will generate new knowledge on the experiences of Aboriginal and Torres Strait Islander communities and help identify gaps in their engagement throughout the research process. Baarra 2 will examine academic’s perspective of research conduct in line with ethical guidelines, allowing key areas for refinement to be identified. The results of baarra 2 will be further considered with the results of baarra 1 to provide valuable information about how perceptions may differ between Aboriginal and Torres Strait Islander community experiences and researchers. These data will help identify barriers to ethical research implementation, developing new knowledge to strengthen research capabilities. Baarra 3 will explore the perspective of HRECs to understand Aboriginal and Torres Strait Islander representation, administrative burden and processes for ethics applications. Baarra 4 will comprehensively incorporate the findings from baarra 1, 2 and 3, in line with current research literature and framework documents.

    This project explores the implementation of ethical research for Aboriginal and Torres Strait Islander peoples (as presented in tables 1 and 2) in order to offer practical recommendations to refine research practice into the future. Students and academics will benefit from this comprehensive examination of ethical research implementation through data-based and community-informed practices relating to research design, implementation, and reporting for Aboriginal and Torres Strait Islander health research. Through these recommendations, more informed planning can occur, which will maximise efficiency in research implementation, increasing uptake of ethical processes and the potential for positive research outcomes. Aboriginal and Torres Strait Islander communities and peak bodies are recognised as knowledge holders. Funding agencies across Australia can provide the practical recommendations to funded research teams to decrease potential delays in conducting Aboriginal and Torres Strait Islander research. Funding agencies will be offered Aboriginal and Torres Strait Islander community-informed processes, which will support the implementation of high-quality, ethical research. Aboriginal and Torres Strait Islander communities will benefit from a refined research process that addresses any reported barriers they face to engaging in meaningful research as co-owners and active participants.

    Ethics statements

    Patient consent for publication

    Acknowledgments

    We acknowledge that this research is conducted across unceded lands of Aboriginal and Torres Strait Islander peoples and pay respect to the elders and caretakers of the lands, seas, sky and waterways. We acknowledge that Aboriginal and Torres Strait Islander peoples are the knowledge holders and pay respect to their wisdom and processes for knowledge productions and knowledge sharing. We also wish to acknowledge the governing body for this project, the National Health Leadership Forum, and thank them for sharing their wisdom and expertise to ensure this research has tangible benefit and impact for our people.

    References

    1. ↵
      1. Bainbridge R,
      2. McCalman J,
      3. Tsey K, et al
      . Inside-out approaches to promoting aboriginal australian wellbeing: evidence from a decade of community-based participatory research. The International Journal of Health, Wellness, and Society 2011;1:13–28. doi:10.18848/2156-8960/CGP/v01i02/41165
      OpenUrl
    2. ↵
      1. Bainbridge R,
      2. Tsey K,
      3. McCalman J, et al
      . No one’s discussing the elephant in the room: contemplating questions of research impact and benefit in Aboriginal and Torres Strait Islander Australian health research. BMC Public Health 2015;15:696. doi:10.1186/s12889-015-2052-3
    3. ↵
      1. Henry J,
      2. Dunbar T,
      3. Arnott A, et al
      . Indigenous research reform agenda: positioning the cooperative research centre for aboriginal and tropical health links. In: Monograph Series 2. 2002:
    4. ↵
      1. Borch M
      . Rethinking the origins of TERRA nullius. Australian Historical Studies 2001;32:222–39. doi:10.1080/10314610108596162
      OpenUrl
    5. ↵
      1. Cunningham DJ
      . The spinal curvature in an aboriginal australian. Proceedings of the Royal Society of London; 1888:487–504
    6. ↵
      1. Vivian A,
      2. Halloran MJ
      . Dynamics of the policy environment and trauma in relations between Aboriginal and Torres Strait Islander peoples and the settler-colonial state. Critical Social Policy 2022;42:626–47. doi:10.1177/02610183211065701
      OpenUrl
    7. ↵
      1. Lewis D
      . Australian biobank repatriates hundreds of “legacy” indigenous blood samples. Nature 2020;577:11–2. doi:10.1038/d41586-019-03906-5
      OpenUrl
    8. ↵
      1. National Health and Medical Research Council
      . Values and ethics: guidelines for ethical conduct in aboriginal and torres strait Islander health research. Canberra Commonwealth of Australia; 2003. Available: https://www.nhmrc.gov.au/research-policy/ethics/ethical-guidelines-research-aboriginal-and-torres-strait-islander-peoples
    9. ↵
      1. Aboriginal Health and Medical Research Council
      . AH&MRC ethical guidelines: key principles (2020) V2.0. AH&MRC; 2020. Available: https://www.ahmrc.org.au/publication/ahmrc-guidelines-for-research-into-aboriginal-health-2020/
    10. ↵
      1. Australian Institute of Aboriginal and Torres Strait Islander Studies
      . AIATSIS Code of Ethics for Aboriginal and Torres Strait Isalnder Research; 2020. Available: https://aiatsis.gov.au/research/ethical-research/code-ethics
    11. ↵
      1. National Health and Medical Research Council
      . Ethical conduct in research with aboriginal and torres strait Islander peoples and communities: guidelines for researchers and stakeholders. 2018. Available: https://www.nhmrc.gov.au/about-us/resources/ethical-conduct-research-aboriginal-and-torres-strait-islander-peoples-and-communities
    12. ↵
      1. Morey K, On behalf of the Wardliparingga Aboriginal Health Equity Research Theme
      . South australian aboriginal health research accord: companion document. Adelaide, South Australia: SAHMRI, 2017. Available: https://sahmri.org.au/south-australian-aboriginal-health-research-accord
    13. ↵
      1. Lovett R
      . Researching right way: aboriginal and torres strait islander health research ethics: A domestic and international review. AIATSIS, Lowitja Institute; 2013. Available: https://www.nhmrc.gov.au/research-policy/ethics/ethical-guidelines-research-aboriginal-and-torres-strait-islander-peoples
    14. ↵
      1. Aboriginal Health Council of Western Australia
      . Western australian aboriginal health ethics committee (WAAHEC). 2022. Available: https://www.ahcwa.org.au/#!ethics/c6gq
    15. ↵
      1. Australian Institute of Aboriginal and Torres Strait Islander Studies
      . 2019 Revision of the AIATSIS guidelines for ethical research in australian indigenous studies: consultation draft [AIATSIS]. 2019. Available: https://apo.org.au/node/249136
    16. ↵
      1. Jamieson LM,
      2. Paradies YC,
      3. Eades S, et al
      . Ten principles relevant to health research among Indigenous Australian populations. Med J Aust 2012;197:16–8. doi:10.5694/mja11.11642
      OpenUrlCrossRefPubMed
    17. ↵
      1. Bainbridge R,
      2. Tsey K,
      3. Brown C, et al
      . Coming to an ethics of research practice in a remote Aboriginal Australian community. Contemp Nurse 2013;46:18–27. doi:10.5172/conu.2013.46.1.18
      OpenUrl
    18. ↵
      1. Bovill M,
      2. Bar-Zeev Y,
      3. Gruppetta M, et al
      . Collective and negotiated design for a clinical trial addressing smoking cessation supports for Aboriginal and Torres Strait Islander mothers in NSW, SA and Qld-developing a pilot study. Aust J Prim Health 2017;23:497–503. doi:10.1071/PY16140
      OpenUrl
    19. ↵
      1. Wand APF,
      2. Eades SJ
      . Navigating the process of developing a research project in Aboriginal health. Med J Aust 2008;188:584–7. doi:10.5694/j.1326-5377.2008.tb01796.x
      OpenUrlPubMedWeb of Science
    20. ↵
      1. Bond C,
      2. Foley W,
      3. Askew D
      . “It puts a human face on the researched” -- a qualitative evaluation of an indigenous health research governance model. Aust N Z J Public Health 2016:S89–95. doi:10.1111/1753-6405.12422
    21. ↵
      1. Eades SJ,
      2. Read AW
      . The Bibbulung Gnarneep project: practical implementation of guidelines on ethics in Indigenous health research. Med J Aust 1999;170:433–6. doi:10.5694/j.1326-5377.1999.tb127820.x
      OpenUrlPubMed
    22. ↵
      1. Kirkham R,
      2. Maple-Brown LJ,
      3. Freeman N, et al
      . Incorporating indigenous knowledge in health services: a consumer partnership framework. Public Health 2019;176:159–62. doi:10.1016/j.puhe.2018.08.009
      OpenUrl
    23. ↵
      1. Lock MJ,
      2. Thomas DP,
      3. Anderson IP, et al
      . Indigenous participation in an informal national Indigenous health policy network. Aust Health Rev 2011;35:309–15. doi:10.1071/AH09812
      OpenUrlPubMed
    24. ↵
      1. Doyle KE
      . Australian Aboriginal peoples and evidence-based policies: closing the gap in social interventions. J Evid Inf Soc Work 2015;12:166–74. doi:10.1080/15433714.2013.777005
      OpenUrl
    25. ↵
      1. Brown A,
      2. O’Shea RL,
      3. Mott K, et al
      . A strategy for translating evidence into policy and practice to close the gap-developing essential service standards for aboriginal and torres strait islander cardiovascular care. Heart Lung Circ 2015;24:119–25. doi:10.1016/j.hlc.2014.09.020
      OpenUrl
    26. ↵
      1. Bessarab D,
      2. Ng’andu B
      . Yarning about yarning as a legitimate method in Indigenous research. IJCIS 2010;3:37–50. doi:10.5204/ijcis.v3i1.57
      OpenUrl
    27. ↵
      1. Doyle K,
      2. Cleary M,
      3. Blanchard D, et al
      . The yerin dilly bag model of indigenist health research. Qual Health Res 2017;27:1288–301. doi:10.1177/1049732317700125
      OpenUrl
    28. ↵
      1. Huria T,
      2. Palmer SC,
      3. Pitama S, et al
      . Consolidated criteria for strengthening reporting of health research involving Indigenous peoples: the consider statement. BMC Med Res Methodol 2019;19:173. doi:10.1186/s12874-019-0815-8
    29. ↵
      1. Griffiths K,
      2. Coleman C,
      3. Al-Yaman F, et al
      . The identification of Aboriginal and Torres Strait Islander people in official statistics and other data: critical issues of international significance. SJI 2019;35:91–106. doi:10.3233/SJI-180491
      OpenUrl
    30. ↵
      1. Walter M,
      2. Anderson C
      . Indigenous statistics: A quantitative research methodology. London & New York: Left Coast Pres, Inc, 2013.
    31. ↵
      1. Lowitja Institute
      . Close the gap campaign report 2022 - transforming power: voices for generational change [Lowitja Institute]. 2022. Available: https://www.lowitja.org.au/page/services/resources/Cultural-and-social-determinants/culture-for-health-and-wellbeing/close-the-gap-campaign-report-2022---transforming-power-voices-for-generational-change
    32. ↵
      1. Foley D
      . Indigenous epistemology and indigenous standpoint theory. In: Social Alternatives 22. 2003: 44–52.
      OpenUrl
    33. ↵
      1. Rigney L-I
      . Internationalization of an Indigenous anticolonial cultural critique of research methodologies: a guide to indigenist research methodology and its principles. Wicazo Sa Review 1999;14:109. doi:10.2307/1409555
      OpenUrlCrossRef
    34. ↵
      1. Nilson C
      . A journey toward cultural competence: the role of researcher reflexivity in Indigenous research. J Transcult Nurs 2017;28:119–27. doi:10.1177/1043659616642825
      OpenUrl
    35. ↵
      1. Smith LT
      . Decolonizing methodologies: research and indigenous peoples. London: Zed Books, 1999.
    36. ↵
      1. Pearson O,
      2. Schwartzkopff K,
      3. Dawson A, et al
      . Aboriginal community controlled health organisations address health equity through action on the social determinants of health of Aboriginal and Torres Strait Islander peoples in Australia. BMC Public Health 2020;20:1859. doi:10.1186/s12889-020-09943-4
    37. ↵
      1. Campbell MA,
      2. Hunt J,
      3. Walker D, et al
      . The oral health care experiences of NSW Aboriginal community controlled health services. Aust N Z J Public Health 2015;39:21–5. doi:10.1111/1753-6405.12294
      OpenUrl
    38. ↵
      1. Kennedy M,
      2. Bennett J,
      3. Maidment S, et al
      . Interrogating the intentions for Aboriginal and Torres Strait Islander health: a narrative review of research outputs since the introduction of closing the gap. Med J Aust 2022;217:50–7. doi:10.5694/mja2.51601
      OpenUrl
    39. ↵
      1. Stewart JM,
      2. Sanson-Fisher RW,
      3. Eades SJ, et al
      . Strategies for increasing high-quality intervention research in Aboriginal and Torres Strait Islander health: views of leading researchers. Med J Aust 2010;192:612–5. doi:10.5694/j.1326-5377.2010.tb03653.x
      OpenUrlPubMedWeb of Science
    40. ↵
      1. Kukutai T,
      2. Taylor J
      . Indigenous data sovereignty: toward an agenda [ANU press]. 2016. Available: https://press.anu.edu.au/publications/series/caepr/indigenous-data-sovereignty
    41. ↵
      1. National Health and Medical Research Council
      . Road map 3: A strategic framework for improving aboriginal and torres strait islander health through research. 2018. Available: https://www.nhmrc.gov.au/health-advice/aboriginal-and-torres-strait-islander-health/road-map-3
      1. National Health and Medical Research Council
      . Keeping research on track II. 2018. Available: https://www.nhmrc.gov.au/about-us/resources/keeping-research-track-ii

    Supplementary materials

    • Supplementary Data

      This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.

    Footnotes

    • Twitter @RomanyMcGuffog

    • Contributors MK conceived the study. MK, RM, FC and TR drafted the manuscript. MK, AB, JB, CC, SE, KG, BH, JH, KK, PO and MW are study investigators who contributed to the development of the project and study design. All authors provided comments and critical revisions on the manuscript and approved the final version.

    • Funding This project is funded by an NHMRC Ideas Grant (APP2001767) led by the University of Newcastle. This research was supported by funding from the HMRI Equity in Health and Wellbeing Research Program. This research was also supported by an Australian Government Research Training Program (RTP) Scholarship. BH is supported by a Colin Dodds Australian Rotary Health Postdoctoral Fellowship (G1801108). MK is funded by an NHMRC Early Career Fellowship #1158670. AB is supported by NHMRC Senior Research Fellowship (GNT1137563). JH is funded by NHMRC Emerging Leadership Fellowship (#1174758). KG is funded under the Scientia Program at the University of New South Wales (N/A).

    • Competing interests None declared.

    • Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Author note To demonstrate the cultural positioning and Indigenous leadership of the research team, we have provided the traditional lands of our Aboriginal and Torres Strait Islander authors. We believe that providing this information is crucial to reflexive research and a critical part of being sovereign researchers. Catherine Chamberlain - Palawa Trawlwoolway; Jaqui Hughes - Wagadagam; Kelvin Kong - Worimi; Mark Wenitong - Kabi Kabi; Alex Brown - Yuin; Sandra Eades - Noongar; Kalinda Griffiths - Yawuru; Felicitiy Collis - Gomeroi; Peter O'Mara - Wiradjuri; Tanika Ridgeway - Worimi; Maggie Walter - Palawa; Michelle Kennedy - Wiradjuri

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.