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Consensus recommendations on multiple sclerosis management in Australia and New Zealand: part 1.
IF 6.7 2区 医学 Q1 MEDICINE, GENERAL & INTERNAL Pub Date : 2025-02-09 DOI: 10.5694/mja2.52578
Jessica Shipley, James Beharry, Wei Yeh, Nabil Seery, Yi Chao Foong, Darshini Ayton, Pakeeran Siriratnam, Tracie Tan, Heidi Beadnall, Joshua Barton, Francesca Bridge, Robb Wesselingh, Lisa Taylor, Louise Rath, Jodi Haartsen, Mohammad Gadi, Cassie Nesbitt, Michael Zhong, Victoria Cushing, Fiona McKay, Julia Morahan, Benjamin Peter Trewin, Izanne Roos, Mark Marriott, Ai-Lan Nguyen, Emma Downey, Joanne Crosby, Julian Bosco, Jennifer Taylor, Lauren Giles, Nevin John, Ernest Butler, Anneke van der Walt, Helmut Butzkueven, Stefan Blum, Marion Simpson, Mark Slee, Sudarshini Ramanathan, Todd Hardy, Richard A L Macdonell, Katherine Buzzard, Deborah F Mason, Jeannette Lechner-Scott, Trevor J Kilpatrick, Tomas Kalincik, Bruce V Taylor, Simon A Broadley, Stephen Reddel, Douglas Johnson, Mastura Monif

Introduction: Multiple sclerosis (MS) is a chronic inflammatory demyelinating and degenerative disease of the central nervous system. There were 33 335 people with MS in Australia in 2021 and 2917 in New Zealand in 2006 and the prevalence and incidence are increasing with time. Although new treatments have substantially improved outcomes in recent decades, the treatment landscape has become increasingly complex due to the expanding number of disease-modifying therapies (DMTs) and associated safety considerations.

Main recommendations: A total of 80 consensus recommendations were developed on the current best-practice management of MS in Australia and New Zealand. Part 1 of these guidelines outlines the consensus recommendations covering domains including DMT counselling and selection, pre-DMT assessments, monitoring disease activity on DMT, switching DMT, and discontinuing DMT. The remaining recommendations are outlined in Part 2, encompassing risk mitigation strategies during treatment with DMT, managing DMT in special situations (including pregnancy, postpartum, breastfeeding, active infection including COVID-19, and malignancy), general lifestyle measures, acute MS relapses, and symptomatic treatments for MS.

Changes in management as a result of the guidelines: This two-part position statement provides a practical resource for clinicians on current best-practice consensus recommendations for managing adults (≥ 18 years old) with MS in the Australian and New Zealand health care settings. It outlines the 14 DMTs currently available through the Australian Pharmaceutical Benefits Scheme and eight through the New Zealand Pharmaceutical Schedule, including the unique efficacy, safety and monitoring considerations of each. Through these guidelines, we aim to support safe, timely and effective management of patients with MS in Australia and New Zealand.

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引用次数: 0
Consensus recommendations on multiple sclerosis management in Australia and New Zealand: part 2.
IF 6.7 2区 医学 Q1 MEDICINE, GENERAL & INTERNAL Pub Date : 2025-02-09 DOI: 10.5694/mja2.52577
Jessica Shipley, James Beharry, Wei Yeh, Nabil Seery, Yi Chao Foong, Darshini Ayton, Pakeeran Siriratnam, Tracie Tan, Heidi Beadnall, Joshua Barton, Francesca Bridge, Robb Wesselingh, Lisa Taylor, Louise Rath, Jodi Haartsen, Mohammad Gadi, Cassie Nesbitt, Michael Zhong, Victoria Cushing, Fiona McKay, Julia Morahan, Benjamin Peter Trewin, Izanne Roos, Mark Marriott, Ai-Lan Nguyen, Emma Downey, Joanne Crosby, Julian Bosco, Jennifer Taylor, Lauren Giles, Nevin John, Ernest Butler, Anneke van der Walt, Helmut Butzkueven, Stefan Blum, Marion Simpson, Mark Slee, Sudarshini Ramanathan, Todd Hardy, Richard A L Macdonell, Katherine Buzzard, Deborah F Mason, Jeannette Lechner-Scott, Trevor J Kilpatrick, Tomas Kalincik, Bruce V Taylor, Simon A Broadley, Stephen Reddel, Douglas Johnson, Mastura Monif

Introduction: Multiple sclerosis (MS) is a chronic inflammatory and neurodegenerative disease of the central nervous system with rapidly evolving treatment options and strategies. An iterative modified Delphi process was used to develop 80 consensus recommendations for the management of MS in Australia and New Zealand. Part 1 of these guidelines includes recommendations related to selection of initial disease-modifying therapy (DMT) for MS, assessments before commencing DMT, monitoring disease activity on DMT, switching DMT, and discontinuing DMT.

Main recommendations: This article, Part 2, covers recommendations related to risk mitigation during treatment with DMT, managing DMT in special situations (including pregnancy, postpartum, breastfeeding, active infection including COVID-19, and malignancy), general lifestyle measures for MS, acute MS relapses, and symptomatic treatments.

Changes in management as a result of the guidelines: Together with Part 1, this consensus statement provides practical guidance for clinicians involved in the care of adults (≥ 18 years old) with MS in Australia and New Zealand. A safe, effective and comprehensive approach to managing MS is crucial for improving long term outcomes and quality of life in individuals affected by MS.

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引用次数: 0
Potentially preventable medication-related hospitalisations with cardiovascular disease of Aboriginal and Torres Strait Islander people, Queensland, 2013-2017: a retrospective cohort study.
IF 6.7 2区 医学 Q1 MEDICINE, GENERAL & INTERNAL Pub Date : 2025-02-06 DOI: 10.5694/mja2.52600
Jean Spinks, Gabor Mihala, Warren Jennings, Robert S Ware, Lisa M Kalisch Ellett, Elizabeth E Roughead, Daniel Williamson

Objective: To identify the proportion of hospitalisations (inpatient admissions and emergency department presentations) of Aboriginal and Torres Strait Islander people in Queensland that were medication-related and potentially preventable for nine clinical indicators of cardiovascular disease (CVD).

Study design: Retrospective cohort study; analysis of linked hospitalisations and emergency department presentations data and administrative records of medical services, pharmaceuticals, and deaths.

Setting, participants: Aboriginal or Torres Strait Islander adults (18 years or older) admitted to Queensland public and private hospitals, 1 January 2013 - 31 December 2017.

Main outcome measures: Potentially preventable medication-related hospitalisations (PPMRHs), defined by a set of clinical indicators describing CVD; deaths within 30 days of PPMRHs; hospital costs.

Results: We identified 31 472 CVD-related hospitalisations, of which 11 469 were of people with medical histories suggesting harm that was foreseeable and preventable with appropriate treatment. Of the 7886 hospitalisations with congestive heart failure, 4350 (55%) were of people with prior CVD diagnoses; 681 (16%) were associated with use of medicines known to exacerbate congestive heart failure, and 1488 (34%) were associated with underuse of angiotensin-converting enzyme inhibitors, angiotensin receptor blockers, or angiotensin receptor-neprilysin inhibitors. Of the 1089 hospitalisations with myocardial infarction of people who had previously experienced myocardial infarction or acute coronary syndrome events, 809 (74%) were not receiving recommended treatment at the time of hospitalisation. Of the 5417 hospitalisations with ischaemic events of people with histories including diabetes and earlier ischaemic events, 3343 (62%) were not receiving antiplatelet or lipid-lowering therapy. The median cost associated with PPMRHs for the time period (2013-2017) was $4352 (interquartile range, $8742), and 136 (3%) of CVD-related deaths within 30 days of hospital discharge followed PPMRH events.

Conclusions: Interventions supporting targeted and timely medication safety services for Aboriginal and Torres Strait Islander people need to be reviewed and improved to reduce the numbers of avoidable hospitalisations and deaths.

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引用次数: 0
Use of ChatGPT to obtain health information in Australia, 2024: insights from a nationally representative survey.
IF 6.7 2区 医学 Q1 MEDICINE, GENERAL & INTERNAL Pub Date : 2025-02-04 DOI: 10.5694/mja2.52598
Julie Ayre, Erin Cvejic, Kirsten J McCaffery
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引用次数: 0
Aboriginal and Torres Strait Islander community experiences and recommendations for health and medical research: a mixed methods study
IF 6.7 2区 医学 Q1 MEDICINE, GENERAL & INTERNAL Pub Date : 2025-02-02 DOI: 10.5694/mja2.52571
Felicity Collis, Kade Booth, Jamie Bryant, Tanika Ridgeway, Catherine Chamberlain, Jaquelyne Hughes, Kalinda E Griffiths, Mark Wenitong, Peter O'Mara, Alex Brown, Sandra J Eades, Kelvin M Kong, Michelle Kennedy
<div> <section> <h3> Objective</h3> <p>To describe Aboriginal and Torres Strait Islander communities’ processes, positioning and experiences of health and medical research and their recommendations.</p> </section> <section> <h3> Design</h3> <p>A cross-sectional online and paper-based survey.</p> </section> <section> <h3> Setting, participants</h3> <p>Representatives from Aboriginal and Torres Strait Islander health services and community-controlled organisations in Australia.</p> </section> <section> <h3> Main outcome measures</h3> <p>Responses to a 33-item mixed methods survey that explored communities’ positioning and processes relating to health and medical research and their experiences of health and medical research in the previous 5 years. Recommendations for improving health and medical research were elicited via two open-ended questions.</p> </section> <section> <h3> Results</h3> <p>Fifty-one community representatives nationally responded to the survey. Most representatives reported feeling slightly or very positive about research (37, 73%). More than half (33, 65%) reported having formal governance processes, and two-thirds of those without governance processes were interested in establishing such processes (12, 67%). Almost half reported that research has sometimes or never had benefit (25, 49%). Ethical principles that were most often reported as essential included those relating to sharing results back with community (45, 88%), translating research into policy and practice (37, 73%), employing Aboriginal and Torres Strait Islander staff (37, 73%), Indigenous data sovereignty and governance (36, 71%) and research agreements (35, 69%). Community representatives reported being approached frequently and in the later stages of research, with little input during the development and design stages of research. Most representatives reported that their communities had participated in Indigenous-led research (39, 76%). Community representatives highlighted the need for appropriate resourcing and funding to drive and lead their own research agendas.</p> </section> <section> <h3> Conclusion</h3> <p>Aboriginal and Torres Strait Islander communities continue to have negative experiences of research despite four decades of advocating for control, ownership and leadership of health and medical research. Researchers, funding bodies and institutions must
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引用次数: 0
Reported processes and practices of researchers applying for human research ethics approval for Aboriginal and Torres Strait Islander health research: a mixed methods study
IF 6.7 2区 医学 Q1 MEDICINE, GENERAL & INTERNAL Pub Date : 2025-02-02 DOI: 10.5694/mja2.52565
Jamie Bryant, Kade Booth, Felicity Collis, Catherine Chamberlain, Jaquelyne Hughes, Breanne Hobden, Kalinda E Griffiths, Mark Wenitong, Peter O'Mara, Alex Brown, Sandra J Eades, Kelvin M Kong, Raymond W Lovett, Michelle Kennedy
<div> <section> <h3> Objectives</h3> <p>To examine self-reported practices for obtaining ethics approval and reflections on ethics application processes among researchers who have conducted Aboriginal and Torres Strait Islander health and medical research.</p> </section> <section> <h3> Study design</h3> <p>Cross-sectional online survey.</p> </section> <section> <h3> Setting and participants</h3> <p>Australian-based researchers who conducted research that included Aboriginal and Torres Strait Islander people or their data.</p> </section> <section> <h3> Main outcome measures</h3> <p>Results from a 74-item online survey that participants completed, which included questions on demographics, ethics processes, perceptions of engagement in Aboriginal and Torres Strait Islander research, and barriers to and enablers of conducting Aboriginal and Torres Strait Islander research.</p> </section> <section> <h3> Results</h3> <p>Of 553 eligible researchers who commenced the survey, 439 (79.4%) answered all of the questions and were included in the analysis. A total of 327 participants (74.5%) had obtained ethics approval from an Aboriginal human research ethics committee (AHREC), 254 (57.9%) had obtained multistate ethics approvals and 270 (61.5%) had not participated in ethics training specifically for Aboriginal and Torres Strait Islander research. Participants were significantly more likely to report being very or extremely confident in managing the ethics application process if they had ≥ 6 years of research experience, had participated in training, had obtained ethics approval from an AHREC, or dedicated > 50% of their time to Aboriginal and Torres Strait Islander research. Participants acknowledged the importance of ethics approval processes in improving research practices, however they identified time and costs as barriers. Aboriginal and Torres Strait Islander participants identified that ethics processes do not always uphold Indigenous approaches or methodologies.</p> </section> <section> <h3> Conclusions</h3> <p>Processes for obtaining ethics approval for Aboriginal and Torres Strait Islander health and medical research do not meet contemporary research needs and would be strengthened by streamlining ethics application processes, reducing time and cost barriers, and enhancing cultural appropriateness. We join calls for the establishment of state-base
{"title":"Reported processes and practices of researchers applying for human research ethics approval for Aboriginal and Torres Strait Islander health research: a mixed methods study","authors":"Jamie Bryant,&nbsp;Kade Booth,&nbsp;Felicity Collis,&nbsp;Catherine Chamberlain,&nbsp;Jaquelyne Hughes,&nbsp;Breanne Hobden,&nbsp;Kalinda E Griffiths,&nbsp;Mark Wenitong,&nbsp;Peter O'Mara,&nbsp;Alex Brown,&nbsp;Sandra J Eades,&nbsp;Kelvin M Kong,&nbsp;Raymond W Lovett,&nbsp;Michelle Kennedy","doi":"10.5694/mja2.52565","DOIUrl":"10.5694/mja2.52565","url":null,"abstract":"&lt;div&gt;\u0000 \u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Objectives&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;To examine self-reported practices for obtaining ethics approval and reflections on ethics application processes among researchers who have conducted Aboriginal and Torres Strait Islander health and medical research.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Study design&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Cross-sectional online survey.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Setting and participants&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Australian-based researchers who conducted research that included Aboriginal and Torres Strait Islander people or their data.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Main outcome measures&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Results from a 74-item online survey that participants completed, which included questions on demographics, ethics processes, perceptions of engagement in Aboriginal and Torres Strait Islander research, and barriers to and enablers of conducting Aboriginal and Torres Strait Islander research.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Results&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Of 553 eligible researchers who commenced the survey, 439 (79.4%) answered all of the questions and were included in the analysis. A total of 327 participants (74.5%) had obtained ethics approval from an Aboriginal human research ethics committee (AHREC), 254 (57.9%) had obtained multistate ethics approvals and 270 (61.5%) had not participated in ethics training specifically for Aboriginal and Torres Strait Islander research. Participants were significantly more likely to report being very or extremely confident in managing the ethics application process if they had ≥ 6 years of research experience, had participated in training, had obtained ethics approval from an AHREC, or dedicated &gt; 50% of their time to Aboriginal and Torres Strait Islander research. Participants acknowledged the importance of ethics approval processes in improving research practices, however they identified time and costs as barriers. Aboriginal and Torres Strait Islander participants identified that ethics processes do not always uphold Indigenous approaches or methodologies.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Conclusions&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Processes for obtaining ethics approval for Aboriginal and Torres Strait Islander health and medical research do not meet contemporary research needs and would be strengthened by streamlining ethics application processes, reducing time and cost barriers, and enhancing cultural appropriateness. We join calls for the establishment of state-base","PeriodicalId":18214,"journal":{"name":"Medical Journal of Australia","volume":"222 S2","pages":"S25-S33"},"PeriodicalIF":6.7,"publicationDate":"2025-02-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.5694/mja2.52565","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143074955","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Human research ethics committee processes and practices for approving Aboriginal and Torres Strait Islander health research: a mixed methods study
IF 6.7 2区 医学 Q1 MEDICINE, GENERAL & INTERNAL Pub Date : 2025-02-02 DOI: 10.5694/mja2.52563
Michelle Kennedy, Kade Booth, Jamie Bryant, Felicity Collis, Catherine Chamberlain, Jaquelyne Hughes, Romany McGuffog, Breanne Hobden, Kalinda E Griffiths, Mark Wenitong, Peter O'Mara, Alex Brown, Sandra J Eades, Kelvin M Kong, Raymond W Lovett

Objectives

To describe human research ethics committee (HREC) members’ reports of: HREC membership structures; HREC processes for reviewing Aboriginal and Torres Strait Islander health and medical research; and experiences and perceptions of review operations.

Study design

Cross-sectional 36-item survey and qualitative interviews with a subsample of survey participants.

Setting, participants

Current and past members (preceding five years) of HRECs who assessed Aboriginal and Torres Strait Islander research.

Main outcomes

Survey and interview results related to HREC structures, processes and functioning; challenges in review processes; and what is needed to improve ethical governance.

Results

229 HREC members completed the survey and 13 were interviewed. Half the participants (115 of 221, 52%) reported having an Aboriginal and Torres Strait Islander representative position. Key issues identified related to assessment processes and resourcing, including burden on Aboriginal and Torres Strait Islander members, ability for Aboriginal and Torres Strait Islander HRECs to manage additional applications, lack of clarity around specific assessment criteria for general population studies, lack of cohesion across the application or complaints processes, and lack of resourcing and infrastructure to monitor ethical practice after approval.

Conclusion

Aboriginal and Torres Strait Islander people carry an important role and burden in the review of applications and monitoring of health research. However, Aboriginal and Torres Strait Islander people are not presently involved in all aspects of ethical research governance within current HREC structures, including the review and monitoring of approved research. Standardised processes and guidelines that uphold Aboriginal and Torres Strait Islander rights and expert knowledges are required.

{"title":"Human research ethics committee processes and practices for approving Aboriginal and Torres Strait Islander health research: a mixed methods study","authors":"Michelle Kennedy,&nbsp;Kade Booth,&nbsp;Jamie Bryant,&nbsp;Felicity Collis,&nbsp;Catherine Chamberlain,&nbsp;Jaquelyne Hughes,&nbsp;Romany McGuffog,&nbsp;Breanne Hobden,&nbsp;Kalinda E Griffiths,&nbsp;Mark Wenitong,&nbsp;Peter O'Mara,&nbsp;Alex Brown,&nbsp;Sandra J Eades,&nbsp;Kelvin M Kong,&nbsp;Raymond W Lovett","doi":"10.5694/mja2.52563","DOIUrl":"10.5694/mja2.52563","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Objectives</h3>\u0000 \u0000 <p>To describe human research ethics committee (HREC) members’ reports of: HREC membership structures; HREC processes for reviewing Aboriginal and Torres Strait Islander health and medical research; and experiences and perceptions of review operations.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Study design</h3>\u0000 \u0000 <p>Cross-sectional 36-item survey and qualitative interviews with a subsample of survey participants.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Setting, participants</h3>\u0000 \u0000 <p>Current and past members (preceding five years) of HRECs who assessed Aboriginal and Torres Strait Islander research.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Main outcomes</h3>\u0000 \u0000 <p>Survey and interview results related to HREC structures, processes and functioning; challenges in review processes; and what is needed to improve ethical governance.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>229 HREC members completed the survey and 13 were interviewed. Half the participants (115 of 221, 52%) reported having an Aboriginal and Torres Strait Islander representative position. Key issues identified related to assessment processes and resourcing, including burden on Aboriginal and Torres Strait Islander members, ability for Aboriginal and Torres Strait Islander HRECs to manage additional applications, lack of clarity around specific assessment criteria for general population studies, lack of cohesion across the application or complaints processes, and lack of resourcing and infrastructure to monitor ethical practice after approval.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Aboriginal and Torres Strait Islander people carry an important role and burden in the review of applications and monitoring of health research. However, Aboriginal and Torres Strait Islander people are not presently involved in all aspects of ethical research governance within current HREC structures, including the review and monitoring of approved research. Standardised processes and guidelines that uphold Aboriginal and Torres Strait Islander rights and expert knowledges are required.</p>\u0000 </section>\u0000 </div>","PeriodicalId":18214,"journal":{"name":"Medical Journal of Australia","volume":"222 S2","pages":"S34-S41"},"PeriodicalIF":6.7,"publicationDate":"2025-02-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.5694/mja2.52563","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143074941","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Beyond ethical guidelines: upholding Aboriginal and Torres Strait Islander ethical governance in health and medical research. A scoping review
IF 6.7 2区 医学 Q1 MEDICINE, GENERAL & INTERNAL Pub Date : 2025-02-02 DOI: 10.5694/mja2.52564
Felicity Collis, Kade Booth, Jamie Bryant, Michelle Kennedy

Objectives

To examine what ethics approvals are being sought for Aboriginal and Torres Strait Islander health and medical research, and to determine what proportion of this research upholds Aboriginal and Torres Strait Islander ethical governance via an Aboriginal and Torres Strait Islander community-controlled human research ethics committee (AHREC) by jurisdiction and funding body type.

Study design

Scoping review of all original, peer-reviewed health and medical literature published over a 5-year period (January 2018 to December 2022).

Data sources

Extending on a previous review, the search tool LIt.search was used to access all literature relating to Aboriginal and Torres Strait Islander health and medical research.

Results

589 eligible publications were included from the parent review, and a further 1703 publications were identified from the updated search. A total of 945 publications were included. A substantial number of ethics approvals were obtained from government-based ethics committees (394, 41.7%). More than half of the publications reported obtaining institutional ethics approval (514, 54.4%). Less than half (400, 42.3%) reported obtaining AHREC approval. Almost one-third of publications were on research that was conducted in states or territories where there is no AHREC (334, 35.3%). Publications did not always report obtaining AHREC approvals, including in jurisdictions where one operates.

Conclusions

We found a concerning lack of Aboriginal and Torres Strait Islander ethical governance reported in health and medical research. Acknowledging that Aboriginal and Torres Strait Islander ethics guidelines and AHRECs were established due to harm caused to communities, these results suggest a high risk, with research not consistently being deemed safe, respectful and beneficial with appropriate AHREC ethics review and approval. We join calls for the establishment of AHRECs in all jurisdictions and nationally. Furthermore, we urge funding bodies and institutions to uphold requirements for Aboriginal and Torres Strait Islander ethical governance in research and funding agreements, as well as institutional policies and procedures.

{"title":"Beyond ethical guidelines: upholding Aboriginal and Torres Strait Islander ethical governance in health and medical research. A scoping review","authors":"Felicity Collis,&nbsp;Kade Booth,&nbsp;Jamie Bryant,&nbsp;Michelle Kennedy","doi":"10.5694/mja2.52564","DOIUrl":"10.5694/mja2.52564","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Objectives</h3>\u0000 \u0000 <p>To examine what ethics approvals are being sought for Aboriginal and Torres Strait Islander health and medical research, and to determine what proportion of this research upholds Aboriginal and Torres Strait Islander ethical governance via an Aboriginal and Torres Strait Islander community-controlled human research ethics committee (AHREC) by jurisdiction and funding body type.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Study design</h3>\u0000 \u0000 <p>Scoping review of all original, peer-reviewed health and medical literature published over a 5-year period (January 2018 to December 2022).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Data sources</h3>\u0000 \u0000 <p>Extending on a previous review, the search tool LIt.search was used to access all literature relating to Aboriginal and Torres Strait Islander health and medical research.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>589 eligible publications were included from the parent review, and a further 1703 publications were identified from the updated search. A total of 945 publications were included. A substantial number of ethics approvals were obtained from government-based ethics committees (394, 41.7%). More than half of the publications reported obtaining institutional ethics approval (514, 54.4%). Less than half (400, 42.3%) reported obtaining AHREC approval. Almost one-third of publications were on research that was conducted in states or territories where there is no AHREC (334, 35.3%). Publications did not always report obtaining AHREC approvals, including in jurisdictions where one operates.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>We found a concerning lack of Aboriginal and Torres Strait Islander ethical governance reported in health and medical research. Acknowledging that Aboriginal and Torres Strait Islander ethics guidelines and AHRECs were established due to harm caused to communities, these results suggest a high risk, with research not consistently being deemed safe, respectful and beneficial with appropriate AHREC ethics review and approval. We join calls for the establishment of AHRECs in all jurisdictions and nationally. Furthermore, we urge funding bodies and institutions to uphold requirements for Aboriginal and Torres Strait Islander ethical governance in research and funding agreements, as well as institutional policies and procedures.</p>\u0000 </section>\u0000 </div>","PeriodicalId":18214,"journal":{"name":"Medical Journal of Australia","volume":"222 S2","pages":"S42-S48"},"PeriodicalIF":6.7,"publicationDate":"2025-02-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.5694/mja2.52564","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143074866","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Murru Minya: a national exploration of ethical research and research ethics in Aboriginal and Torres Strait Islander health and medical research
IF 6.7 2区 医学 Q1 MEDICINE, GENERAL & INTERNAL Pub Date : 2025-02-02 DOI: 10.5694/mja2.52573
Felicity Collis, Michelle Kennedy
<p>It is well established that when “Indigenous people become the researchers and not merely the researched, the activity of research is transformed”.<span><sup>1</sup></span> But what happens when the researched actively seek to transform the system of research itself?</p><p>The <i>Murru Minya</i> project originated from the lead researcher's observations of the significant disparities between community conversations about their experiences of research and the narratives by researchers in academic literature. This raised questions about the conduct and application of ethical research practices in Aboriginal and Torres Strait Islander health and medical research. <i>Murru</i> (path) <i>Minya</i> (explain) is Wiradjuri language expressing a direct, true or straight way to explain this path we are on now, what is in the past to explain the path for the future.</p><p>We assert that there are clear distinctions between “ethics”, “ethical practice”, and “ethical processes”, and that these terms should not be used interchangeably. It is therefore pertinent to first explain our definitions of these key terms. Ethics broadly refers to a standard set of values and principles that guide our understanding of what is right and wrong. Ethical practice is concerned with how these standards and principles are implemented by researchers and their institutions through their behaviours, policies, and decision making processes. Ethical processes are the relative administrative duties required to be adhered to when seeking institutional ethical review and approval of research. These processes have been developed by Western-Eurocentric institutions and embedded in their systems to attempt to ensure that ethical research practice is upheld. This mechanism has limited accountability, monitoring, and reporting, making it difficult to ascertain whether ethical review and approval processes have resulted in the true application of ethical practices by researchers working with Aboriginal and Torres Strait Islander communities. Accordingly, it is vital to examine and evaluate the effectiveness of these frameworks and systems for and by Aboriginal and Torres Islander people.</p><p>This editorial was written by Michelle Kennedy, Wiradjuri woman, lead researcher and tobacco resistance expert, and Felicity Collis, Gomeroi woman and PhD Candidate, both currently working in the university and community-controlled research sector.</p><p>We do not assert that the <i>Murru Minya</i> project<span><sup>2</sup></span> is the first to explore ethical research principles, values, and guidelines in the context of Aboriginal and Torres Strait Islander health and medical research. Rather, we recognise the leadership of Aboriginal and Torres Strait Islander people and communities in the development, implementation, consultation, and revision of ethical research practice guidelines and frameworks.<span><sup>3-6</sup></span> The work by those before us has produced foundational knowledge to in
{"title":"Murru Minya: a national exploration of ethical research and research ethics in Aboriginal and Torres Strait Islander health and medical research","authors":"Felicity Collis,&nbsp;Michelle Kennedy","doi":"10.5694/mja2.52573","DOIUrl":"10.5694/mja2.52573","url":null,"abstract":"&lt;p&gt;It is well established that when “Indigenous people become the researchers and not merely the researched, the activity of research is transformed”.&lt;span&gt;&lt;sup&gt;1&lt;/sup&gt;&lt;/span&gt; But what happens when the researched actively seek to transform the system of research itself?&lt;/p&gt;&lt;p&gt;The &lt;i&gt;Murru Minya&lt;/i&gt; project originated from the lead researcher's observations of the significant disparities between community conversations about their experiences of research and the narratives by researchers in academic literature. This raised questions about the conduct and application of ethical research practices in Aboriginal and Torres Strait Islander health and medical research. &lt;i&gt;Murru&lt;/i&gt; (path) &lt;i&gt;Minya&lt;/i&gt; (explain) is Wiradjuri language expressing a direct, true or straight way to explain this path we are on now, what is in the past to explain the path for the future.&lt;/p&gt;&lt;p&gt;We assert that there are clear distinctions between “ethics”, “ethical practice”, and “ethical processes”, and that these terms should not be used interchangeably. It is therefore pertinent to first explain our definitions of these key terms. Ethics broadly refers to a standard set of values and principles that guide our understanding of what is right and wrong. Ethical practice is concerned with how these standards and principles are implemented by researchers and their institutions through their behaviours, policies, and decision making processes. Ethical processes are the relative administrative duties required to be adhered to when seeking institutional ethical review and approval of research. These processes have been developed by Western-Eurocentric institutions and embedded in their systems to attempt to ensure that ethical research practice is upheld. This mechanism has limited accountability, monitoring, and reporting, making it difficult to ascertain whether ethical review and approval processes have resulted in the true application of ethical practices by researchers working with Aboriginal and Torres Strait Islander communities. Accordingly, it is vital to examine and evaluate the effectiveness of these frameworks and systems for and by Aboriginal and Torres Islander people.&lt;/p&gt;&lt;p&gt;This editorial was written by Michelle Kennedy, Wiradjuri woman, lead researcher and tobacco resistance expert, and Felicity Collis, Gomeroi woman and PhD Candidate, both currently working in the university and community-controlled research sector.&lt;/p&gt;&lt;p&gt;We do not assert that the &lt;i&gt;Murru Minya&lt;/i&gt; project&lt;span&gt;&lt;sup&gt;2&lt;/sup&gt;&lt;/span&gt; is the first to explore ethical research principles, values, and guidelines in the context of Aboriginal and Torres Strait Islander health and medical research. Rather, we recognise the leadership of Aboriginal and Torres Strait Islander people and communities in the development, implementation, consultation, and revision of ethical research practice guidelines and frameworks.&lt;span&gt;&lt;sup&gt;3-6&lt;/sup&gt;&lt;/span&gt; The work by those before us has produced foundational knowledge to in","PeriodicalId":18214,"journal":{"name":"Medical Journal of Australia","volume":"222 S2","pages":"S3-S5"},"PeriodicalIF":6.7,"publicationDate":"2025-02-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.5694/mja2.52573","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143074943","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
How well are researchers applying ethical principles and practices in Aboriginal and Torres Strait Islander health and medical research? A cross-sectional study
IF 6.7 2区 医学 Q1 MEDICINE, GENERAL & INTERNAL Pub Date : 2025-02-02 DOI: 10.5694/mja2.52572
Michelle Kennedy, Kade Booth, Jamie Bryant, Felicity Collis, Catherine Chamberlain, Jaquelyne Hughes, Breanne Hobden, Kalinda E Griffiths, Mark Wenitong, Peter O'Mara, Alex Brown, Sandra J Eades, Kelvin M Kong, Raymond W Lovett
<div> <section> <h3> Objective</h3> <p>Describe perceptions of how well researchers conducting Aboriginal and Torres Strait Islander health and medical research apply ethical research practices.</p> </section> <section> <h3> Study design</h3> <p>Cross-sectional online survey.</p> </section> <section> <h3> Setting, participants</h3> <p>Researchers who included Aboriginal and Torres Strait Islander people or their data in their projects, and current or past members (previous 5 years) of a human research ethics committee that assessed Aboriginal and Torres Strait Islander research.</p> </section> <section> <h3> Main outcome measures</h3> <p>Researchers’ engagement with 15 ethical research practices (on a 5-point Likert scale, poor to excellent).</p> </section> <section> <h3> Results</h3> <p>561 participants (382 researchers [68.1%] and 179 human research ethics committee members [31.9%]) completed the survey. Across all research practices, a rating of excellent was least frequently endorsed, with the highest frequency being for employing Aboriginal and Torres Strait Islander team members (38 participants [6.8%]). A rating of poor was most common for enacting Indigenous data sovereignty and governance principles (156 participants [27.8%]). Aboriginal and Torres Strait Islander respondents had significantly lower odds of perceiving high levels of adherence to ethical principles than non-Aboriginal and Torres Strait Islander respondents for all ethical principles, except employing Aboriginal and Torres Strait Islander team members. In particular, Aboriginal and Torres Strait Islander participants had 65% lower odds of perceiving that researchers have high rates of adhering to disseminating results back to the community (odds ratio [OR], 0.35; 95% CI, 0.22–0.57), 56% lower odds of perceiving that researchers have high rates of adhering to engaging Aboriginal community in research implementation (OR, 0.44; 95% CI, 0.27–0.73), and 54% lower odds of perceiving that researchers have high rates of adhering to engaging Aboriginal community in developing research questions (OR, 0.46; 95% CI, 0.28–0.75).</p> </section> <section> <h3> Conclusion</h3> <p>Researchers are not consistently implementing all ethical practices outlined in guidelines for research involving Aboriginal and Torres Strait Islander people. We call for commitment from researchers, institutions
{"title":"How well are researchers applying ethical principles and practices in Aboriginal and Torres Strait Islander health and medical research? A cross-sectional study","authors":"Michelle Kennedy,&nbsp;Kade Booth,&nbsp;Jamie Bryant,&nbsp;Felicity Collis,&nbsp;Catherine Chamberlain,&nbsp;Jaquelyne Hughes,&nbsp;Breanne Hobden,&nbsp;Kalinda E Griffiths,&nbsp;Mark Wenitong,&nbsp;Peter O'Mara,&nbsp;Alex Brown,&nbsp;Sandra J Eades,&nbsp;Kelvin M Kong,&nbsp;Raymond W Lovett","doi":"10.5694/mja2.52572","DOIUrl":"10.5694/mja2.52572","url":null,"abstract":"&lt;div&gt;\u0000 \u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Objective&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Describe perceptions of how well researchers conducting Aboriginal and Torres Strait Islander health and medical research apply ethical research practices.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Study design&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Cross-sectional online survey.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Setting, participants&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Researchers who included Aboriginal and Torres Strait Islander people or their data in their projects, and current or past members (previous 5 years) of a human research ethics committee that assessed Aboriginal and Torres Strait Islander research.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Main outcome measures&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Researchers’ engagement with 15 ethical research practices (on a 5-point Likert scale, poor to excellent).&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Results&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;561 participants (382 researchers [68.1%] and 179 human research ethics committee members [31.9%]) completed the survey. Across all research practices, a rating of excellent was least frequently endorsed, with the highest frequency being for employing Aboriginal and Torres Strait Islander team members (38 participants [6.8%]). A rating of poor was most common for enacting Indigenous data sovereignty and governance principles (156 participants [27.8%]). Aboriginal and Torres Strait Islander respondents had significantly lower odds of perceiving high levels of adherence to ethical principles than non-Aboriginal and Torres Strait Islander respondents for all ethical principles, except employing Aboriginal and Torres Strait Islander team members. In particular, Aboriginal and Torres Strait Islander participants had 65% lower odds of perceiving that researchers have high rates of adhering to disseminating results back to the community (odds ratio [OR], 0.35; 95% CI, 0.22–0.57), 56% lower odds of perceiving that researchers have high rates of adhering to engaging Aboriginal community in research implementation (OR, 0.44; 95% CI, 0.27–0.73), and 54% lower odds of perceiving that researchers have high rates of adhering to engaging Aboriginal community in developing research questions (OR, 0.46; 95% CI, 0.28–0.75).&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Conclusion&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Researchers are not consistently implementing all ethical practices outlined in guidelines for research involving Aboriginal and Torres Strait Islander people. We call for commitment from researchers, institutions ","PeriodicalId":18214,"journal":{"name":"Medical Journal of Australia","volume":"222 S2","pages":"S49-S56"},"PeriodicalIF":6.7,"publicationDate":"2025-02-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.5694/mja2.52572","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143074939","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
期刊
Medical Journal of Australia
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