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Why do we need Category D appointments on HRECs and how should we find suitable people?0

 

Judith C S Redman

The compulsory presence of the Category D members on Australian Human Research Ethics Committees (HRECs) can be controversial. Category D used to be termed ‘minister of religion’ and most HRECs recruited ordained Christian ministers to fill these roles, although at least one of the Monash University HREC Category D members has been a rabbi (recruited by me). People question the need for a ‘religious perspective’ on HRECs, especially on those that regularly look at research concerning issues like abortion, contraception or euthanasia, or stem-cell research where ‘the Church’ is seen to have negative stances. I am a Uniting Church minister and a long-term university chaplain, which makes me a prime target for recruitment to the Category D position on university HRECs. I am currently in my 18th year as a Category D appointment, serving my fourth university. Clearly, it is something I find interesting and rewarding and I would like to offer some comments on the nature of the position.

First, referring to the category as ‘minister of religion’ is misleading, because the role is not to provide a religious perspective per se. ‘Minister of religion’ was included as a category (along with lay woman, lay man and member external to the institution) in the First Report by the NH&MRC Working Party On Ethics in Medical Research published in 1982 (p 20) and incorporated into the first National Statement published in 1983. In the 1999 version of the National Statement, the position was listed as: ‘at least one member who is a minister of religion, or a person who performs a similar role in a community such as an Aboriginal elder’ (NHMRC, 1999, p 16 – emphasis mine), thus hinting that it was not the minister’s religious perspective that was being sought. In fact, even when Australian society was far less multi-faith than it is today, no one clergy-person could provide a representative religious perspective. The 2007 National Statement made the purpose more overt in describing the category as ‘at least one person who performs a pastoral care role in a community, for example, an Aboriginal elder, a minister of religion’ (NHMRC, 2007 p 81). This wording has carried across to the current revision. (NHMRC, 2018 p 87).

What, then, is it that Category D members of HRECs bring to meetings? What is pastoral care? Finding a simple definition is somewhat challenging but Grove (2004, p. 34) defines it as ‘all measures to assist an individual person or a community reach their full potential, success and happiness in coming to a deeper understanding of their own humanness’. Pastoral carers are not therapists, but they do come into contact with human beings at high and low points of their lives. Often, however, they see more every-day lows than those that typically cause people to make appointments with therapists – and very few people will pay a therapist to share joys. They do, however, come to congregational clergy and Aboriginal elders to share the joy of the birth of a child and to mark other rites of passage within the life of their communities. Pastoral carers thus have insights into how people make meaning in their lives that many other people are not privileged to share. They can therefore offer broader perspectives on how participants might respond to some kinds of research than can many other HREC members.

Second, ‘the Church’ does not have a uniform perspective on biomedical ethical issues. While some denominations have specific stances on abortion, contraception, euthanasia, stem-cell research and so on, others do not. In my own denomination, most forms of contraception are widely accepted although some, such as the ‘morning after pill’ would divide members and clergy alike. Abortion, euthanasia and stem-cell research are all controversial, with Uniting Church members and clergy holding a range of opinions very close to the spread found in the wider community. It is therefore not possible to assume that any given Christian minister of religion will be against this kind of research as a matter of principle. This would also be true for pastoral carers from other world religions. Further, it is my experience as someone who has worked in a multicultural and multifaith university environment for several decades that while the things that divide religions are the things we notice most, we have far more in common than things that divide us. A fundamental part of most religions is an attempt to help people to understand what it means to be human, so someone with pastoral care experience from within a religious context can offer valuable insights into the human condition that are not bound by the teachings of her or his religion. They may well, for instance, have supported people making difficult decisions about biomedical ethical issues and have a better insight into whether the researchers have put appropriate measures in place for support of participants.

In addition, ministers of religion are not the only people on HRECs whose perspectives are shaped by religion. I have certainly known people serving in other roles on HRECs whose faith positions affect how they view some of the applications we are considering. The religious perspectives of Category D members are more likely to be overt, but any member of a HREC should declare a conflict of interest if s/he holds a faith/moral position that would not allow her/him to approve particular research no matter how well it complied with the National Statement. It is also quite likely that ministers of religion have studied ethics at a tertiary level as part of their ministry training.

Thus, I would argue that people with experience in providing pastoral care bring a unique and valuable perspective to the deliberations of HRECs, as long as they are selected with a little care. If you are responsible for recruiting members and biomedical research involving abortion, euthanasia, contraception or stem cell research and/or research around human sexuality and sexual orientation come up regularly in your business, you need to address the issues in your recruitment of Category D members. Although members of some religious groups are more likely to have problems with these issues, you cannot predict how a particular pastoral carer might react based on his or her religious group’s official policy. If you are replacing a Category D appointee or recruiting an extra one, the current one may be able to suggest colleagues that s/he thinks might be suitable. If you are setting up a new committee, the Category D appointees on nearby committees might have some ideas about suitable people. Some pastoral carers might even be willing to belong to more than one committee as long as the agendas are not too long and the meeting dates do not clash. In the end, however, you need to inform potential appointees about the kinds of issues you regularly deal with and ask them if they see any problem about their being able to assess these kinds of applications objectively. You also need to ensure that they understand that they are being recruited for their pastoral care experience not to provide a religious perspective. Taking these two steps should see your committee well served by your Category D appointments as they offer their particular perspectives on the applications before you.

We would like to build upon Judith’s excellent post about the pastoral position in future editions with similar commentaries about other positions.  Please contact us on HREC_members@ahrecs.com to discuss.

References

Grove, M. (2004). The Three R’s of Pastoral Care: Relationships, Respect and Responsibility. Pastoral Care in Education, 22(2), 34-38. doi:10.1111/j.0264-3944.2004.00261.x.

National Health and Medical Research Council (Australia) (1982). First Report By NHMRC Working Party on Ethics In Medical Research: Research in Humans. National Health and Medical Research Council, Canberra, ACT.

National Health and Medical Research Council (Australia) (1999). National Statement on Ethical Conduct in Research involving Humans. National Health and Medical Research Council, Canberra, ACT.

National Health and Medical Research Council (Australia) (2007). National Statement on Ethical Conduct in Human Research. National Health and Medical Research Council, Canberra, ACT.

National Health and Medical Research Council (Australia) (2018). National Statement on Ethical Conduct in Human Research, updated 2018. National Health and Medical Research Council, Canberra, ACT.

Contributor
Rev Dr Judith C S Redman, Chaplaincy Coordinator, Charles Sturt and La Trobe Universities, Albury-Wodonga Campuses | jredman@csu.edu.au

This post may be cited as:
Redman, JCS (27 March 2019) Why do we need Category D appointments on HRECs and how should we find suitable people? Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/why-do-we-need-category-d-appointments-on-hrecs-and-how-should-we-find-suitable-people

Conducting research with (not on) consumers in health – exploring ethical considerations0

 

Authors: Joan Carlini,1 Kristen Ranse,2 Noela Baglot,3 and Laurie Grealish2

1. Griffith Business School, Griffith University, Southport campus, Queensland. Email: J.Carlini@Griffith.edu.au.
2. Menzies Health Institute Queensland and School of Nursing & Midwifery, Griffith University and Nursing & Midwifery Education and Research Unit, Gold Coast Health.
3. Health service consumer.

Growing healthcare demands and limited resources raises concerns about the sustainability of practical benefits resulting from research. The Consumers’ Health Forum of Australia and the National Health and Medical Research Council have developed a Statement on Consumer and Community Involvement in Health and Medical Health Research to better align the health and medical research with community need and improve research impact.  However, the traditional research-to-practice pathway can result in findings that are not “implementable”, which has led to the active recruitment of consumers’ views in co-design of interventions.  Consumers are now recognised as valuable knowledge resource to improve the relevance and translation of research into practice.

Co-design with consumers and community organisations

Co-design is the practice of consumers and suppliers, such as researchers and clinicians, coming together to look at a problem and design a solution together.  Consumer engagement in healthcare is considered critical to safe and high quality services. While health service consumers, often labelled as patients or clients, are the subject of research in order to better understand health and illness, engaging consumers in the conduct of research is emerging as an important area for consideration in health service research.

In healthcare, co-design can strengthen the relations between the community and academia, and ensure the relevancy of the research question and intervention. Despite the benefits of using co-design, there are also unique challenges that can become apparent. The co-creation process involves collaboration between researchers and consumers from the outset, making pre-specification of interventions unlikely.

End of life project background

In our project, researchers partnered with clinicians and consumers in the development of an intervention to support people near end of life to achieve a death at home. Consumers were involved in developing the intervention, which consisted of (1) a brochure outlining key considerations to achieve a death at home and (2) the process of discharge home near end of life. Consumers were members of two design groups, one for each part of the intervention and others attended a workshop to review the brochure and process. Please see our earlier article for more information.

Unlike participatory action research, in co-design consumers are focused on the intervention rather than the research process itself. Consumers contributed to the quality of the information that people might need when considering a death at home, including the processes that facilitated the transition home.

Method of engagement

In the co-design process, researchers modified established research techniques, such as nominal group technique, to distil those features of the discharge process and brochure that were considered most important. The group negotiated importance and inclusion of various elements in the drafting process. In these discussions, the importance of some elements were not equally valued by consumers, clinicians and researchers leading to rich and robust debate. The groups met over five meetings and through these meetings developed rapport that enabled frank discussion and the ability to work towards consensus that was consumer-led.

Ethical principles applied

The importance of engaging with consumers as partners in research must be carefully considered in the design and conduct of research to ensure that ethical principles are upheld. In considering how consumer engagement can support the research project’s fulfilment of ethical principles, including those in the National Statement, we consider the following:

Voluntary

The consumers involved in the project were invited to attend based on their history as a health consumer and interest in end of life care.  Their engagement in the project was voluntary, and they had the freedom to participate at a level of their choosing (i.e., attend meetings, community forum, out of session meetings).

Nonmaleficence

The researchers took care to ensure that the wellbeing of the consumers was maintained. One consumer’s recent lived experience with the topic meant that the researcher would informally check-in on the welfare of the consumer and gather feedback on the process, participation, and interactions of the previous meeting.

Beneficence

The group Chairs carried responsibility to support the group to establish a shared vision about the value of keeping the person who is dying at the centre of care. The complexities of how beneficence can be achieved, and possible barriers, emerged during meeting discussions and this information was used to support the implementation plan. For example, as the discussions progressed, the value of a formal family meeting and the need for general practitioner and transition nursing support was considered essential to enact patient and family well-being.

Consumers were included as committee members and accepted as part of the group, with all group members, who were representing a range of stakeholders with an interest in discharge home near end of life, invited to contribute their views at each meeting. All stakeholders were valued as being integral to the solution. In this project, consumers were considered as experts, understanding what happens outside of hospital and in the community, and directing the researchers to focus on family limitations as well as strengths. Because the group members were focused on the same, shared goal early in their work together, the process provided respect for families who decide to die at home, as well as those who may need to return to hospital.

Fidelity

Minutes were taken at each meeting, with action items discussed at the beginning of each meeting. Member were accountable for actions that they had agreed to undertake, with outcomes discussed at the meeting. The finalised draft of the two documents, the information brochure and discharge process, were circulated to the consumers, as members of the respective design groups, for comment. The consumers’ commented on how pleased they were to see the tangible outcome.  In another example, when one researcher (JC) was preparing this article, she spoke with one of the consumers about her experience with the co-design approach of the project.  Later, when the researcher provided a hard copy of the draft article to the consumer, she responded happily that her view “was well developed & expressed clearly”.

Respect

Respect for consumers who would be using the intervention was considered important during the groups’ deliberations. For example, consumer members of the information committee, tasked to design a brochure to support patients and families, were invited to review readily available resources about dying at home available in Queensland and other Australian jurisdictions. Through this activity, they were able to identify the information and conversations that would be most important in the local context. They also contributed to the language used in the brochure, supporting the use of example questions to focus health professionals on what was important to the consumer, making the planning process more personalised.

Justice

In relation to justice, this intervention and associated project provides guidance on the appropriate clinical and non-clinical people and resources that can enhance a person and family’s experience of dying at home. In the Gold Coast community, this project provides a vehicle for people living with chronic, life limiting diseases to imagine an end of life experience that is not in the hospital. Within the brochure, information about the financial, social and personal challenges of caring for a person at home is explored, ensuring that people have awareness of those challenges and can plan for them.

Safety

All members of the co-design teams should be well supported in a safe environment. A structured timeline indicating the milestones were developed in advance, thus setting a framework for meeting agendas.  This structure allowed participants to feel secure in knowing the process, approaches and activities that would be covered.  Both of the Design Group chairs were experienced researchers and knowledgeable about the process of co-design. As Chairs, they ensured that the conduct of all members were respectful, hence creating a safe and supportive atmosphere.

The future of consumer engagement in research

Based on our experiences, consumers as experts on health services added value to the outputs of the design process. In this study, there were specific value assumptions associated with consumer engagement in the intervention design process, including:

  • Clear expectations of consumer contribution, the anticipated project outcomes, and some knowledge or experience of the issue under investigation enhances contribution;
  • Consumers require formal training in consumer advocacy and require the time, understanding and passion to sustain their commitment; and
  • Engagement is enhanced by effective communication in regard to formal agendas, written minutes and ongoing personal communication.

Image source: Gold Coast Hospital Health Service, Achieving end of life care at home, A guide for patients and their family carers (2019)

In our case, consumers with experience of end of life care, as either a family member or a paid carer, were able to make a sound contribution that enhanced discussions and the final product. Other stakeholders including clinicians from the hospital, community health service providers and researchers expressed learning from the insights provided by the consumers.

In this project, consumer engagement through co-design was limited to developing the intervention. Consumer contribution has been found to enhance scientific and ethical standards, provide legitimacy and authority, and increases project credibility. Our experience resonates with these findings.

As consumer advocacy training becomes more sophisticated, there are clear opportunities to involve consumers more actively as members of research governance groups and in some cases, research teams. Consumers bring an experiential perspective, often grounded in local context that can be particularly helpful in translational or implementation research, an emerging research discipline in Australia. We invite other researchers, consumers and clinicians to contribute to this constructive conversation about the value of involving consumers in research co-design, with a view to satisfying the national quality standard in health care, focused on Partnering with Consumers. Not only can the quality of research improve, but consumer engagement can assist with focusing on matters of importance to the local community, increase public confidence in research through openness and transparency, and increasing local community understanding of research.

Acknowledgement

This project was supported by a Queensland Health Clinical Excellence Division, Care at End of Life SEED funding grant (2018). Project team members include Grealish, L., Cross, A., Sharma, S., Carlini, J., Ranse, K., Hiremagalur, B., & Broadbent, A..

This post may be cited as:
Carlini, J., Ranse, K., Baglot, N. and Grealish, L. (26 February 2019) Conducting research with (not on) consumers in health – exploring ethical considerations. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/conducting-research-with-not-on-consumers-in-health-exploring-ethical-considerations

 

The Ethics of Evaluation Research0

 

Evaluation research is used to assess the value of such things as services, interventions, and policies. The term ‘evaluation research’ makes it seem homogeneous but in fact evaluation research draws on a range of theoretical perspectives and a wide variety of quantitative and qualitative methods. However, there are three things evaluation research usually does that set it apart from other kinds of research. It:

  1. asks what is working well and where and how improvements could be made;
  2. involves stakeholders; and
  3. offers practical recommendations for action.

The American Evaluation Association (AEA), with members from over 60 countries, has five ‘guiding principles’ which ‘reflect the core values of the AEA’ (2018):

Systematic inquiry: evaluators conduct data-based inquiries that are thorough, methodical, and contextually relevant.

Competence: evaluators provide skilled professional services to stakeholders.

Integrity: evaluators behave with honesty and transparency in order to ensure the integrity of the evaluation.

Respect for people: evaluators honour the dignity, well-being, and self-worth of individuals and acknowledge the influence of culture within and across groups.

Common good and equity: evaluators strive to contribute to the common good and advancement of an equitable and just society.

The question of how research ethics review processes should engage with evaluation research has not yet been definitively decided in many research institutions in Australia and New Zealand. Helen Kara’s article alerts us to the degree to which evaluation researchers encounters novel ethical issues. We shall explore some of the possible institutional approaches in a forthcoming Patreon resource.

This is unusual in being thorough – there is much more explanation in the document – and up to date. The Australasian Evaluation Society (AES) has Guidelines for the Ethical Conduct of Evaluations which were last revised in 2013. This is a much more discursive document – 13 pages to the AEA’s four – which offers guidance to evaluation commissioners as well as evaluation researchers. The AES guidelines also refer to and include Indigenous ethical principles and priorities. In particular, reciprocity is highlighted as a specific principle to be followed. This is another difference from the AEA document in which Indigenous evaluation and evaluators are not mentioned.
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The United Nations Evaluation Group also specifies evaluation principles in its ethical guidelines (2008) but they are 10 years older than the AEA’s. Beyond these, there are few codes of ethics, or equivalent, readily available from national and international evaluation bodies. Also, evaluation research rarely comes within the purview of human research ethics committees unless it’s being conducted within a university or a health service. And books on evaluation research rarely mention ethics.
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Recent research has shown that a proportion of evaluation researchers will assert that ethics does not apply to evaluation and that they have never encountered ethical difficulties in their work (Morris, 2015, p.32; Williams, 2016, p.545). This seems very odd to me, as I have been doing evaluation research for the last 20 years and I have encountered ethical difficulties in every project. It also seems worrying as I wonder whether the next generation of evaluation researchers are learning to believe that they do not need to think about ethics.
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In my recent book, Research Ethics in the Real World (2018), I demonstrated that ethical issues exist at all stages of the research process, from the initial idea for a research question up to and including aftercare. This applies to evaluation research just as much as it does to any other kind of research. I also demonstrated that there are some ethical considerations at the macro level for evaluation research, such as funding, stakeholder involvement, and publishing.
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Well-funded organisations or projects can allocate money for evaluation; poorly-funded ones cannot. This means that evaluation research is routinely done where funding is available rather than where evaluation is most needed. In the United Kingdom, where I am based, we have been undergoing an ideological programme of austerity involving massive cuts to public services over the last nine years. This has come from successive governments that have also prioritised evaluation research, funding expensive national ‘What Works’ centres on themes such as ageing, health, and childhood, right through the austerity years. Yet to the best of my knowledge there has been no evaluation of the impact of any service closure. This seems short-sighted at best – though it does illustrate my point that evaluation happens where money is being spent. Also, an explicit purpose of evaluation research is often to provide evidence to use in future funding negotiations, which means that results are effectively expected to be positive. This means that pressures associated with funding can introduce bias into evaluation research right from the start. Combine this with an evaluator who needs to be paid for their work in order to pay their own bills, and you have a situation that is well on its way to being a money-fuelled toxic mess.
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Involving stakeholders is a key principle of evaluation research. The AEA define ‘stakeholders’ as ‘individuals, groups, or organizations served by, or with a legitimate interest in, an evaluation including those who might be affected by an evaluation’ and suggest that evaluators should communicate with stakeholders about all aspects of the evaluation (2018). Again, here, the use of a single word implies homogeneity when in fact evaluation stakeholders may range from Government ministers to some of the most marginalised people in society. This can make involving them difficult: some will be too busy to be involved, some will be impossible to find, and some will not want to be involved. Which leaves evaluators caught between an impractical principle and an unprincipled practice. There is some good practice in stakeholder involvement (Cartland, Ruch-Ross and Mason, 2012:171-177), but there is also a great deal of tokenism which is not ethical (Kara, 2018:63). Also, even when all groups of stakeholders are effectively engaged, this can bring new ethical problems. For example, their values and interests may be in conflict which can be challenging to manage, particularly alongside the inevitable power imbalances. Even if stakeholders work well together such that power imbalances are reduced within the evaluation, it is unlikely those reductions will carry over into the wider world.
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Commissioners of evaluation are reluctant to publish reports unless they are overwhelmingly positive. I had an example of this some years ago when I evaluated an innovative pilot project tackling substance misuse. From the start my client said they were keen to publish the evaluation report. I worked with stakeholders to collect and analyse my data and made around 10 recommendations, all but one of which said words to the effect of ‘good job, carry on’. Just one recommendation offered constructive criticism of one aspect of the project and made suggestions for improvement. My client asked me to remove that recommendation; I thought about it carefully but in the end refused because it was fully supported by the evaluation data. We had two more meetings about it and in the end, my client decided that they would not publish the report. This was unfortunate because others could have learned from the evaluation findings and methods, and because failure to publish increases the risk of work being duplicated which results in public funds being wasted. Sadly, as a commissioned researcher, I had signed away my intellectual property so it was out of my hands. Everyone involved in evaluation research can tell these kinds of tales. However, it is too simplistic to suggest that publication should always be a requirement. In some cases, the publication could be harmful, such as when a critical evaluation might lead to the economy of service closure, to the detriment of service users and staff, rather than to more resource-intensive improvements in policy and practice. But overall, unless there is a good reason to withhold a report, the publication is the ethical route.
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As the AEA principles suggest, evaluation researchers are in a good position to help increase social justice by influencing evaluation stakeholders to become more ethical. I would argue that there are several compelling reasons, outlined above, why all evaluation researchers should learn to think and act ethically.
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References

American Evaluation Association (2018) Guiding Principles. Washington, DC: American Evaluation Association.

Australasian Evaluation Society (2013) Guidelines for the Ethical Conduct of Evaluations. www.aes.asn.au

Cartland, J., Ruch-Ross, H. and Mason, M. (2012) Engaging community researchers in evaluation: looking at the experiences of community partners in school-based projects in the US. In Goodson, L. and Phillimore, J. (eds) Community Research for Participation: From Theory to Method, pp 169-184. Bristol, UK: Policy Press.

Kara, H. (2018) Research Ethics in the Real World: Euro-Western and Indigenous Perspectives. Bristol, UK: Policy Press.

Morris, M. (2015) Research on evaluation ethics: reflections and an agenda. In Brandon, P. (ed) Research on evaluation: new directions for evaluation, 31–42. Hoboken, NJ: Wiley.

United Nations Evaluation Group (2008) UNEG Ethical Guidelines for Evaluation. http://www.unevaluation.org/document/detail/102

Williams, L. (2016) Ethics in international development evaluation and research: what is the problem, why does it matter and what can we do about it? Journal of Development Effectiveness 8(4) 535–52. DOI: 10.1080/19439342.2016.1244700.
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Recommended reading

Morris, M. (ed) (2008) Evaluation Ethics for Best Practice: Cases and Commentaries. New York, NY: The Guilford Press.

Donaldson, S. and Picciotto, R. (eds) (2016) Evaluation for an Equitable Society. Charlotte, NC: Information Age Publishing, Inc.

Contributor
Helen Kara, Director, We Research It Ltd | profilehelen@weresearchit.co.uk

This post may be cited as:
Kara, H. (26 January 2019) The Ethics of Evaluation Research. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/the-ethics-of-evaluation-research

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

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