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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

New research integrity professional development resource0

 

All Australian research institutions that receive NHMRC or ARC research funding or otherwise operate under the auspices of Universities Australia should be steadily working toward implementing the 2018 version of the Australian Code for the Responsible Conduct of Researchby 30 June 2019.

We’d argue that all other Australian research institutions should also be working on implementation.

Australian Code (2018) template ppt, over 40 short audio clips, activity sheet and facilitator notes – https://www.patreon.com/posts/23800537

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Suggested audio snippets for the slides
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Embedded audio# about the suite of workshop resources about the Australian Code (2018)
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Sample audio snippet# from the >40 audio clips

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# To listen to the embedded audio by Mark Israel, download the ppts. View the slides that have an audio speaker icon. Click the icon and press play

As you will have seen from the countdown on the AHRECS website, we’re down to the last 50% of the time to implement the Australian Code (2018). We understand that in many institutions research staff and management are stretched and that the recent cuts in research infrastructure funding will do little to help that. We are not trying to provoke panic or undue stress, but believe that a commitment to research integrity (like research ethics) involves long-term, consistent and coherent planning and investment and not erratic and unsustained bursts of ‘excitement’. Those institutions that are still struggling with the 2007 Code should see that as an indication that they need to take the 2018 Code seriously and not hope that its demands will go away.
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Awareness-raising and professional development are effective ways to implement the Australian Code (2018) and invest in the research culture of an institution.
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To assist our patrons, we’ve come up with a cost-effective resource.

Gold Patrons can now download at no charge:

  1. A template for a workshop for HDR candidates and other early career researchers (to be delivered by a member of your staff) about the Australian Code (2018) and research integrity in general.
  2. Over 40 audio clips by Dr Mark Israel that can either played within the above workshop or placed on a resource page for access by your research community.
  3. A group activity sheet of nine vignettes, that are based on real cases.

(1) and (3) are supplied with facilitator notes.

Included with this post is a sheet that suggests which audio clips to use with each slide of the ppt.  The sheet is included with the resources discussed in this post. Also included here is a PowerPoint with an embedded audio clip about the resource.

It only costs USD15/month to become a Gold Patron. Visit https://www.patreon.com/ahrecs to become a patron and for more information.

Of course, AHRECS would be delighted to run such workshops for and with you and to support the development of policy and procedures in your institution that would meet the requirements of the 2018 Australian Code.  See https://ahrecs.com/australiancode2018 for further information about the ways AHRECS can assist you with implementation.

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

This post may be cited as:
Israel, M. (9 January 2018) New research integrity professional development resource. Research Ethics Monthly. Retrieved from: https://ahrecs.com/research-integrity/new-research-integrity-professional-development-resource

The Retraction Watch Database has launched. Here’s what you need to know0

 

We’ve been anticipating the launch of the Retraction Watch database because we’re often asked by HDR candidates and other early career researchers how to determine if a paper has been retracted. The database is a great (and free) service for the research community.

What are your hopes for the database?

As a number of studies have demonstrated, retracted papers continue to be cited as if they had never been retracted. That’s a problem, because it suggests there’s far more wasted effort going into dead ends than there needs to be. And it’s a fixable problem, because one hopes scientists wouldn’t knowingly reference retracted papers.

That’s where the database comes in. We know that many publishers aren’t very good about marking papers as retracted, nor about alerting databases about retractions. By including all retractions, including those that aren’t well-marked on publishers’ sites, or in databases, we hope to make it difficult, if not impossible, to read a paper without knowing whether it was retracted. For that to happen, what’s in our database would have to make it into libraries and reference management software, and that’s a next step.

How do you hope the database will inform researcher practice?

We hope that researchers who study retractions, scientific integrity, and related issues will make use of the database for their work. Since we launched in October, we have had a few requests per week, on average, from such scholars. Here’s one paper using the beta version to see which kinds of peer review are best for catching fraud. We’re happy to provide the dataset subject to a simple data use agreement.

How do you hope the database will inform institutional endeavours?

Publishers, funders and institutions may find it worthwhile to use it for a sort of “background check” of authors and applicants. At least two publishers already check authors against posts on Retraction Watch.

Do you think there is any prospect that the database might be misused?
Like any data, retractions can be misused, particularly if someone doesn’t pay attention to nuance or denominators. A retraction doesn’t necessarilynmean misconduct happened, which is why we categorize each entry according to reason for retraction. And a high number of retractions from a country,institution, or journal may mean more due diligence, not sloppiness.

What might RW do to educate users of the database?

We hope that the package of stories we worked on with Science to highlight findings in the database was a good first step. We published an extensive user’s guide — along with three appendices — when we launched. That guide will evolve as users contact us with more questions. And we encourage would-be users to contact us so we can walk them through issues they’re having, or how to do particular searches. We’re also out on the road a fair amount giving talks, and would be happy to do more, along with workshops on the database itself.

Contributor
Ivan Oransky. Retraction Watch – Retraction Watch profile | team@retractionwatch.com

This post may be cited as:
Oransky, I. (24 December 2018) The Retraction Watch Database has launched. Here’s what you need to know. Research Ethics Monthly. Retrieved from: https://ahrecs.com/research-integrity/the-retraction-watch-database-has-launched-heres-what-you-need-to-know

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