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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Australia Day honours recognise contributions to human research ethics0

Posted by Admin in Human Research Ethics on February 25, 2019 / Keywords: , , ,
 

We wish to add our congratulations to two recipients of honours on Australia Day who have made important contributions to human research ethics in Australia over the last 35 years.

Distinguished Prof. Don Chalmers was chair of the Australian Health Ethics Committee (AHEC) from 1994 to 2000. During this time he, together with Regis Mary Dunne AO, conducted a national review of the role and functioning of institutional ethics committees which led directly to the first National Statement on Ethical Conduct in Research Involving Humans in 1999.

The 1999 National Statement replaced the 1966 NHMRC one-page Statement on Human Experimentation to which numerous supplementary notes had been added across three decades.  The 1999 document was a significant landmark in human research ethics in Australia, not only because it brought that NHMRC history together but also because it was endorsed by the Australian Vice-Chancellor’s Committee, the Australian Research Council. The Australian Academies of the Humanities, Science and Social Sciences also endorsed the Statement and it was supported by the Academy of Technological Sciences and Engineering. As a member of AHEC in 1998-99, I remember how Don led these initiatives and negotiations with characteristic diplomacy, tact and good humour.

Don has made important contributions to genetic and genomic research through the Centre for Law and Genetics at the University of Tasmania and to genomic screening and research through his membership of national working groups.

The national recognition of becoming an Officer of the Order of Australia is a fitting addition to his receipt of the NHMRC Ethics Award in 2010.

Prof. John McNeil, who had received an AM in 2008, was also appointed an Officer of the Order of Australia. Although his contributions have been primarily in clinical epidemiology, cardiovascular research and public health, the award also recognises his chairing of the human research ethics committee of the Alfred Hospital in Melbourne for 30 years.  I had the privilege of attending the committee’s meetings on several occasions and recognised the skill and experience that he brought to that role.

John’s commitment to the value of clinical registers was influential in his strong support for the introduction of an opt-out approach to Chapter 2.3 of the National Statement on Ethical Conduct in Human Research in 2014.

Prof Colin Thomson AM
AHRECS senior consultantcolin.thomson@ahrecs.com

This post may be cited as:
Thomson, C. (25 January 2019) Australia Day honours recognise contributions to human research ethics. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/australia-day-honours-recognise-contributions-to-human-research-ethics

REAlising a collegiate Research Ethics Adviser network0

 

By
Dr Gary Allen| Senior Consultant AHRECS| gary.allen@ahrecs.com
Dr Mark Israel| Senior Consultant AHRECS| mark.israel@ahrecs.com

Our research ethics consultancy activity in recent years has involved us working with a broad range of research institutions. Despite diversity in size, budget, age, geographical reach and mission, in some respects institutions face similar challenges, frustrations and risks. In relation to research ethics, the recurrent themes that we have noticed include:

  1. There being insufficient time and capacity to conduct professional development activities, especially activities focussed on the needs and experiences of schools, departments, research centres and research offices.
  2. A legacy of an adversarial climate, and distrust, between researchers, research ethics reviewers and the research office (Israel et al., 2016).
  3. Serious budgetary constraints.
  4. Difficulty in recruiting new members of the research ethics committee, especially from areas that do not have a long-standing connection to human research ethics or have had difficult experiences with research ethics review. This may be compounded by university initiatives to reshape their workforce in a way that prioritises research income and outputs.
  5. Review feedback needing to be detailed and long, but often receiving poor and aggressive responses.
  6. Difficulty in eliciting constructive, or sometimes any, response to internal or external consultations from some parts of the institution.

We have developed a strategy (Allen and Israel, 2018) that can form part of the response to these matters as part of a commitment to resourcing reflective practice. It draws on existing resources, fosters a better relationship between reviewers and researchers, helps target constructive feedback, builds the capacity of researchers to engage in ethical research, and prepares a new cohort of researchers to join the human research ethics committee.

SHORT BRIEFING PAPER ON REA NETWORKS

https://www.patreon.com/posts/24928731

Available to USD3/month patrons

A network of collegiate Research Ethics Advisers (REAs) enables a group of experienced researchers to act as a source of collegiate advice to other researchers in their area. Among the roles of a REA should be:
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  1. Involvement in facilitating professional development workshops and other activities in their area. This might initially involve them introducing sessions run by the university on particular aspects of research ethics pertinent to specific disciplines, commenting on the issues raised and engaging in discussion. Eventually, the entire activity might be facilitated by the REA. This strategy distributes leadership of human research ethics, and reinforces its important to quality research in their area, not ‘just’ a matter of complying with externally imposed rules.
  2. When applicants are sent complicated feedback, they might usefully be directed to consult their local REA before responding. This allows the review body to leave long written explanations to be complemented and explained by a more personal verbal explanation, and it should improve confidence that the applicant’s response will resolve the matter, rather than requiring another round of feedback.
  3. The REA network can serve as a conduit for information between researchers and reviewers, providing early warning to an institution when clashes might arise over methodology or changes in regulation.

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Having assisted a number of institutions to establish, appoint, provide professional development and support to REA networks, we have found the optimal appointment level to be at the school/team/department level with the number of REAs recruited from an area reflecting the number of researchers in that area who conduct human research.
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In our Patreon area, we have included:
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A briefing note about a standard operating procedure for a REA network with the heading Basic Structure, which provides a plan for the establishment and operation of a collegiate network.

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A subscription of USD 5/month will provide access to this material. A subscription of USD 15/month will provide access to all our Patreon materials. Contact us at Patreon@ahrecs.com to discuss.
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AHRECS would of course be delighted to help you turn those shells into documents tailored to your institution’s needs. We are also able to assist in the establishment and professional development of a collegiate REA network. Contact us at REA@ahrecs.comto discuss.

Figure 1 – A version of this image, which is not watermarked, is available from https://www.patreon.com/ahrecs with a USD3/month subscription.

References:

Allen, G and Israel, M (2018) Moving beyond Regulatory Compliance: Building Institutional Support for Ethical Reflection in Research. In Iphofen, R and Tolich, M (eds) The SAGE Handbook of Qualitative Research Ethics. London: Sage. pp.276-288.

Israel, M, Allen, G and Thomson, C (2016) Australian Research Ethics Governance: Plotting the Demise of the Adversarial Culture. In van den Hoonaard, W and Hamilton, A (eds) The Ethics Rupture: Exploring Alternatives to Formal Research-Ethics Review. Toronto: University of Toronto Press. pp 285-316. http://www.utppublishing.com/The-Ethics-Rupture-Exploring-Alternatives-to-Formal-Research-Ethics-Review.html
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This post may be cited as:
Allen, G. &.Israel, M. (25 February 2019) REAlising a collegiate Research Ethics Adviser network. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/realising-a-collegiate-research-ethics-adviser-network

Consumer Co-design for End of Life Care Discharge Project0

 

In this issue, we are publishing an account of an end-of-life project in whose design there are some features that add to its ethical interest. Many of us are familiar with institutional policies about consumer engagement in human research and have served on project reference groups, but perhaps have less experience with the successful – and ethical – implementation of these. This project may add some valuable understanding of these matters, including:
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  • What insights do the design and information groups offer into the practice of research co-design?
  • Do those insights help to clarify the distinction between co-design and participatory action research?
  • Do those groups have advantages in demonstrating the project’s fulfilment of ethical principles of beneficence, respect or justice
  • Could those groups have a role in overseeing the ethical conduct of a project?
  • Given the subject of this research project, what sort of projects might make best use of groups such as those in this project?

We have invited the author and the research team to provide some follow-up reflection on issues such as these as the project progresses and is completed

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The End of Life Care Discharge Planning Project is led by Associate Professor Laurie Grealish from Griffith University. This research project partners with consumers at all stages, allowing consumers significant contribution. As part of the Queensland Health End of Life Care Strategy, Gold Coast Health is developing a process to support discharge for people near end of life who would like to die at home. A Productivity Commission Report in 2017 noted that although over 70% of Australians prefer to die at home, less than 10% do. This is attributed to the need for improvement in the transition between hospital and community care.

The outcomes of this study are expected to include: (1) an evidence-based discharge process and infrastructure to enhance the transition from hospital [medical wards] to home for end of life care; (2) end of life care information brochure for patients and their family carers; (3) stakeholder feedback to indicate that the process is feasible and satisfactory; and (4) a health service and non-government organisational partnership network to monitor the discharge process and enhance future integrated models of end of life care. Ethical approval has been granted by the Gold Coast Health Human Research Ethics Committee and Griffith University Human Research Ethics Committee.

For the research design stage, three groups were established: 1) Project reference group, 2) Project design group, and, 3) Project information group.

1. Project reference group – The aim of the project reference group is to consider the analysed data and reports from the sub-committees, provide advice on, as well as monitor, implementation strategies. This group is led by Associate Professor Laurie Grealish and has membership from a wide range of stakeholders including hospital clinicians and managers, researchers, community groups, non-government organisations and consumers.

2. Project design group – The purpose of this group is to design an evidence-based discharge process to enable people near the end of life to return home to die if this is their wish. Dr Kristen Ranse from Griffith University is the Chair of this group and the membership of the group includes representatives from Gold Coast Health, consumers, and non-government organisations.

3. Project information group – Led by Dr Joan Carlini from Griffith University, this group is to provide expert advice about what information people need as they consider dying at home. It was identified early by the group that there is an overwhelming amount of information available online and in brochures, leading to confusion. Since this group has stakeholders from a wide range of representatives from health care providers, nongovernment organisations, community groups as well as consumers, there has been a healthy generation of discussions. The consumers on the team led the way in selecting pertinent information and producing a draft document. This was then further modified by the committee, ensuring that the booklet is concise, but also a thorough source of information for end of life care.

The next stage of the project runs from Janulary to July 209, with implementation, data collection and anlaysis, and dissemination of finding.

Contributor
Dr. Joan Carlini, Lecturer, Department of Marketing, Griffith University | Griffith University profile, LinkedIn profile (log in required), Twitter – @joancarlini |

This post may be cited as:
Carlini, J. (18 January 2018) Consumer Co-design for End of Life Care Discharge Project. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/consumer-co-design-for-end-of-life-care-discharge-project

AHRECS Human research ethics workshop in Thailand0

 

One of our consultants (Dr Lindsey Te Ata o Tu MacDonald) recently facilitated a seminar on research ethics in the department of politics and governance at Mahasarakham University, Thailand. After 5 minutes setting out the institutions and codes of Thailand, Lindsey’s session was a practical ‘how to guide’ on research ethics for students and staff. Lindsey has often been called on to give such talks as Chair of the New Zealand Ethics Committee (see nzethics.com) and in his earlier role as Chair of the University of Canterbury Human Ethics Committee. Interestingly, the way in which Lindsey asks researchers to ‘imaginative engage’ with the ethics of their project by asking them how they would design their project if their Grandmother wanted to participate, and it was a stranger doing the research – what Lindsey calls the ‘grandmother test’ – translated directly in to Thai, as the ‘Yai test’.

For more on ‘imaginative engagement’ see Guillemin, M., Gillam, L., Rosenthal, D., & Bolitho, A. (2008). Investigating human research ethics in practice: Project report. Melbourne, VIC, Australia: Centre for Health and Society, The University of Melbourne. , and For Lindsey’s first paper setting out the ‘grandmother test’ see. MacDonald, L. T. A. O. T. (2018). Ethics and Politics. In M. Tolich & C. Davidson (Eds.), Social Science Research in NZ (4th ed.). Auckland: University of Auckland Press.

Participants in the seminar on Ethics in human subject research at the College of Politics and Governance, Mahasarakham University, Thailand

Prof Cherngcharn Chongsomchai, Dean and Head of the College of Politics and Governance, debating a point with students and staff during the seminar.

Contributor
AHRECS Team | Our Services | engage@ahrecs.com

This post may be cited as:
MacDonald, L. T. A. O. T. (22 December 2018) AHRECS Human research ethics workshop in Thailand (2018). Research Ethics Monthly. Retrieved from: https://ahrecs.com/ahrecs-admin/ahrecs-human-research-ethics-workshop-in-thailand

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