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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

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

Ten ways of ensuring affordable professional development in your institution0

 

Research institutions have a responsibility under the Australian Code to ‘Provide ongoing training and education that promotes and supports responsible research conduct for all researchers and those in other relevant roles’ (Responsibility 4). Among other things, the National Statement requires that each member of an HREC (National Statement 5.2.3c) receives professional development.

Some institutions may feel that this places a significant burden on the staff responsible for and the funds available for human research ethics and integrity. It won’t surprise you to hear that AHRECS thinks it can help.

1. We have created an expanding suite of professional development resources for subscribers in Patreon. Many of our clients are happy for us to share materials that have been developed for their specific needs once they have had first use, knowing that they will also benefit from the generosity of our other clients as part of a community of practice. A subscription of USD15 per month (approx. AUD20) enables access to all materials; these can then be shared across your institution. You can see two examples of the resources here. See https://www.patreon.com/ahrecs  for more information and to subscribe.

2. AHRECS runs free webinars of panel-based discussions on pressing matters of general interest. Over the last year, speakers from the NHMRC, AHEC, AHRECS and various HRECs have spoken about how to respond to the new Australian Code and the changes to the National Statement.

3. AHRECS can provide face-to-face workshops of up to a day for HRECs, research ethics advisors, groups of researchers and professional staff. We’ve been doing this for CSIRO for over a decade. We also pre-record in-meeting professional development for HRECs across the country, supplementing these video resources with video-conferenced question and answer sessions. Our offerings in this regard start from $900 for the in-meeting activities to $2300 for a full day on-site workshop. Contents and format can be tailored to your institution’s specific needs.

4. AHRECS publishes the free Research Ethics Monthly. As readers know, REM includes topical items relating to human research ethics and research integrity. Your staff could also draw on their experience to contribute to REM as a way of engaging with and receiving feedback from the broader Australasian research ethics community.

5. Institutions could make greater use of their researchers who engage thoughtfully with research ethics matters. HRECs could invite them to speak about ethics at one of their meetings, and record this to create a library of video materials. AHRECS would be happy to host and share these materials across the sector.

6. AHRECS can provide either mentoring or on-call advice to human research ethics/research integrity officers, secretaries, chairs or senior research leaders via email, phone or video-link (this complements in-house expertise and provides affordable access to decades of human research ethics/research integrity experience)

7. We are happy to recommend purchasing the Griffith University Research Ethics Manual which, at $10,000 allows you to gain access to about two years-worth of resource development in human research ethics. AHRECS doesn’t receive any financial benefit from this#, but we can covert the GUREM to a resource that reflects the jurisdictional and institutional contexts within which your researchers operate. Over the last year, we’ve completed this work for ECU and have created video resources to help researchers make best use of the research ethics manual.

8. AHRECS can run a full Masters unit on social research ethics. We deliver this as an intensive each year in Perth in partnership with the University of Western Australia.

9. Institutions can designate a policy officer responsible for reviewing and disseminating relevant news, industry and professional websites, using Google alerts and research output monitoring to collect material of potential interest/value to the University’s research ethics reviewers, REAs and/or researchers. Some of this work is already done by AHRECS for anyone subscribing to its free news service. The vast majority of links are either directly relevant to Australia or are otherwise of interest to the Australian research ethics community. When items are added, an alert+link is posted to our social media pages (LinkedIn | Twitter | Facebook).

10. Ten sounds so much better than nine, doesn’t it? If you have a crash-hot idea about professional development that you want to share with other people in the sector, please suggest a piece for Research Ethics Monthly.

# Dr Gary Allen is the principal author of the GUREM so does receive a component of the license fee.

Contributor
Mark Israel, AHRECS Senior Consultant
Mark’s profilemark.israel@ahrecs.com

Israel, M. (21 December 2018) Ten ways of ensuring affordable professional development in your institution (2018). Research Ethics Monthly. Retrieved from: https://ahrecs.com/ahrecs-admin/ten-ways-of-ensuring-affordable-professional-development-in-your-institution

 

Beneficence as a Principle in Human Research0

 

Pieper, I. & Thomson, C.J.H. (2016) Beneficence as a Principle in Human Research. Monash Bioethics Review. 34: 117. https://doi.org/10.1007/s40592-016-0061-3

A Series on the Four Principles of the Australian National Statement on Ethics Conduct in Human Research

In this issue of the Research Ethics Monthly, Ian Pieper and Colin Thomson continue their series of short summaries of each of their four co-authored articles on the principles that underpin the Australian National Statement, namely, research merit and integrity, justice, beneficence and respect.

The articles were originally published in the Monash Bioethics Review and remain available to subscription holders to that journal. The publisher, Springer, has generously agreed to place each of the four articles on Free Access for one month after the corresponding short summary is published in the Research Ethics Monthly. Last month they revisited their paper entitled The value of respect in human research ethics: a conceptual analysis and a practical guide. This month they revisit the paper exploring the principle of beneficence in the context of human research. The full paper can be found here.

Beneficence is one of the four values and principles on which the National Statement on Ethical Conduct in Human Research (National Statement) is founded. A requirement for beneficence to be demonstrably present in human research is not a uniquely Australian consideration but is found in many of the human research ethics guidance documents from around the world. Beneficence is an important consideration in that it mirrors the altruistic nature of the voluntary nature of participation in human research.

Being a positive virtue, beneficence is a moral ideal and considerations of it as a principle during the design and ethical assessment of a research project can be seen as subjective. This can make beneficence difficult to identify within research proposals. As a principle which promotes good or charitable outcomes, over and above those imposed by duty, it is not merely synonymous with non malfeasance. Beneficence is the provision of benefits over and above the costs associated with the burdens of research.

This paper provides some clarity for researchers and Human Research Ethics Committee (HREC) members on the role that beneficence plays in discussions about human research ethics. While applying beneficence in human research does involve consideration of risks and benefits to participants, consideration should also extend to individuals, groups, and communities not directly involved in the research

This paper also provides both researchers and HREC members with practical guidance on the application of beneficence in the design, review and conduct of ethical human research. This guidance does not consider beneficence in isolation but places it within the context of the other principles and the National Statement as a whole.

Ian and Colin have produced an activity sheet to accompany this post. It can be found in the subscribers’ area (https://www.patreon.com/ahrecs). A subscription of only USD15/month (approx AUD21/month) provides access to a growing library of activity items, reflections on papers and news, and other resource items. At least two items are added to the library every month.  These are shared on a creative commons basis, so you are free to use them internally without otherwise engaging AHRECS. These items would ordinarily cost more than AUD500. So becoming an AHRECS patron not only helps AHRECS stay a constructive voice for change it’s a way to get access some terrific items for a great price.

Email gary.allen@ahrecs.com for further information.

Contributors:
Ian Pieper, AHRECS Consultant, Ian’s AHRECS profile
Colin Thomson AM, AHRECS Senior Consultant, colin.thomson@ahrecs.com | Colin’s AHRECS profile

This post may be cited as:
Pieper, I & Thomson C. (23  November 2018) Beneficence as a Principle in Human Research. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/beneficence-as-a-principle-in-human-research

We invite debate on issues raised by items we publish. However, we will only publish debate about the issues that the items raise and expect that all contributors model ethical and respectful practice.