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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

 

Griffith University’s implementation of the Australian Code (2018)0

 

Dr Amanda Fernie, Manager Research Ethics & Integrity, Griffith University Dr Gary Allen, Senior Policy Officer, Griffith University

AUSTRALIAN CODE (2007)

At Griffith University, the implementation, operation, investigations and related professional development of/for the 2007 edition of the Australian Code for the Responsible Conduct of Research is the responsibility of the Research Ethics & Integrity team in the Office for Research.

The Griffith University Code for the Responsible Conduct of Research was the University’s policy implementation of the Australian Code (2007) and it was supplemented by the Research Integrity Resource Sheet (RIRS) series. The Griffith University Code was largely a direct repeat of the Australian Code into Griffith University policy. The RIRS is a series of short (most are four pages) guidance documents that provide practical tips related to the University’s implementation of Part A and Part B of Australian Code (2007).

IMPLEMENTING THE AUSTRALIAN CODE (2018)

This is the first post in the series about institutions implementing the Australian Code (2018). We’d love to hear about your instution’s progress and story. Email us at IntegrityStory@ahrecs.com to discuss logistics.

At the outset, Griffith University decided to give its Research Integrity Adviser (RIA) network a more collegiate advisory role, and while RIAs were made available to advise complainants and respondents, or parties in a dispute, their primary role was providing advice and suggestions.
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Professional development workshops on research integrity for new HDR candidates were conducted a few times a year (as part of the orientation) and were co-facilitated by the Office for Research and the Griffith Graduate Research School. Workshops on research integrity were also conducted for new HDR Supervisors as part of their accreditation. Since 2007, professional development workshops in Schools, Departments, Research Centres, Administrative units and Groups have been co-facilitated by the relevant RIA and a member of the Research Ethics & Integrity team.
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APPROACH TO THE AUSTRALIAN CODE (2018)

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Griffith University aims to have fully implemented the Australian Code (2018) by the end of March 2019. Griffith’s Research Committee has recommended to the Academic Committee that the redundant detail of the Griffith University Code be replaced by the Griffith University Responsible Conduct of Research policy. This policy articulates the University’s implementation of the principles and responsibilities of the Australian Code (2018), the role of the University’s collegiate RIAs, and the existence and role of the resource material that will be produced by the Office for Research.
Our Office for Research is currently liaising with the relevant parts of the University to determine who has control of:

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Level 1 – Documents that refer to or link to the Australian Code, where a simple change to the reference/URL is required. Example: HDR candidate supervision policy.
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Level 2 – Documents that derive authority from the Australian Code, where it will need to be determined if the Australian Code (2018) still directly provides that authority or if any changes are required. Example: Publication ethics standards.
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Level 3 – Documents that copy, refer to or use a component of the Australian Code (2007), where it will need to be determined if the Australian Code (2018) still provides that component or if it needs to be replaced by institutional guidance.
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The above work is underway and progressing well.
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In the event new institutional guidance is required, it will be included in the updated RIRS series.
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UPDATED RESEARCH INTEGRITY RESOURCE SHEETS

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The following resource sheets are being produced:
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  1. Introduction to research integrity at Griffith University
  2. Moving to the 2018 version of the Australian Code
  3. Planning and conducting a project responsibly
  4. Responsible research outputs
  5. Responsible data management
  6. Collaborative research: Hints and tips
  7. The responsible supervisor
  8. The responsible candidate
  9. Conflicts of interest
  10. Tips for peer review
  11. Disputes between researchers
  12. Investigations of alleged breaches of the Australian Code for the Responsible Conduct of Research
  13. Alleged breaches: Tips for complainants
  14. Alleged breaches: Tips for respondents
  15. Research Misconduct

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Initially any ‘new’ guidance material will use text from Part A of the Australian Code for the Responsible Conduct of Research (2007), but the intention is to refine the material based on (sub)discipline and methodological feedback from the University’s research community, drawing from useful ideas from the Committee on Publication Ethics (COPE), International Committee of Medical Journal Editors (ICMJE), US Office of Research Integrity (ORI) and the UK Research Integrity Office.
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As new good practice guides are released the relevant RIRS will be reviewed and updated as required.
Griffith University is taking a ‘learning institution’ approach to this material, where it is refined and improved over time based on user feedback and suggestions, institutional and (inter)national experience/events and changes in needs.
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COMMUNICATION PLAN

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The Office for Research is currently finalising a communication plan, in addition to regular updates to Research Committee, the RIA network and the areas of the University identified for the consultation above. This will include briefings for the Group Research Committees.
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AWARENESS AND PROFESSIONAL DEVELOPMENT PLAN
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Early in 2019, the Office for Research and RIAs will commence professional development activities to raise awareness and understanding of the national and international changes.
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Amanda is happy to be contacted with any questions or suggestions about this work.
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Contributors
Amanda Fernie, Griffith University | a.fernie@griffith.edu.au & Gary Allen, Griffith University

This post may be cited as:
Fernie, A. & Allen, G. (26  November 2018) Griffith University’s implementation of the Australian Code (2018). Research Ethics Monthly. Retrieved from: https://ahrecs.com/research-integrity/griffith-universitys-implementation-of-the-australian-code-2018
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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.