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Australian Centre for Health Engagement, Evidence and Values

Deliberation, engagement and values in health

Why is deliberation important?

The ACHEEV Team talks about the importance of public consultation in health policy decisions

Jackie Street [00:00:02] So, Chris, what do you think of the main differences between the deliberative processes that we run and the normal qualitative research like focus groups or even surveys? 

Chris Degeling [00:00:13] I guess the key difference is that they get input from experts. They get the opportunity to have an appraisal of evidence. They get to make judgements about that evidence. They could do it to discuss the issues with each other. So they get to listen to alternative points of views. That's what deliberation is about. And it's one of the key reasons why this research method is so valuable and such that the decisions that they make or the evidence that they end up generating is based on their authentic preferences, what they really would, what someone who's very well informed would say about a particular problem or issue. 

Jackie Street [00:00:46] And they have much longer to consider it. And we give them two to three days with a focus group is one to two hours. 

Chris Degeling [00:00:51] Yep. And that means that really the information that they give is much more inclusive and generally well-informed than something like a like a survey or a focus group, those types of responses. 

Jackie Street  [00:01:05] So I think earlier you were talking about authentic preferences that are the extra time that we give participants, so the two to three days that we allow for those authentic preferences, rather than the one to two hours that a focus group has authored a survey. 

Chris Degeling [00:01:21] Yeah. So that's that's the really the big difference is that that extra time and the information and the opportunity to share points of views, consider evidence, factual based information means that rather than just having a knee jerk response like a survey online focus groups, you really get to the heart of what people what matters to people and what they think should happen around particular issues.

Important health decisions always involve both evidence and values. ACHEEV operates in the space between evidence and values: we make evidence accessible to people, and then support them to make judgements about what matters most, and why.

In a well-designed deliberative process, groups of strangers from very different backgrounds can collaborate to produce recommendations and give good reasons for those recommendations. This can provide practical and principled guidance for decision makers from the professions, regulators or government. We also conduct social research about people’s values, and how they make judgements about the right thing to do in health contexts.

Projects

Researchers

Dr Chris Degeling, Professor Stacy Carter, Professor Annette Braunack-Mayer, Dr Patti Shih, Dr Yves Aquino, Kathleen Prokopovich, Belinda Fabrianesi, Lucy Carolan

Project Description

The Australian Centre for Health Engagement, Evidence and Values (ACHEEV) is the leading centre for high-quality deliberative and values-based research in health and health policy in the Asia-Pacific region. Our aim is not just to do deliberation, engagement and values-based research, but also to think critically about how such research should be done, and to produce methodological scholarship that will drive excellence in these fields.

This includes conducting rigorous reviews of existing literature, critiquing existing work, and writing methodological papers ourselves. Much of this work is situated in the context of empirical bioethics. Bioethics is the discipline concerned with the ethical dimensions of life, including health, healthcare, One Health and biotechnology. While bioethics was traditionally a purely theoretical discipline, it is becoming increasingly empirical, and members of our team have been closely involved in these developments, as reflected in some of the papers listed below.

Outcomes

 

 

Researchers

Project Description

This project takes a multi-disciplinary, mixed methods approach to investigate the ethical, social and legal issues that arise from the use of genomic technologies in the diagnosis and prevention of mitochondrial disease. The central aim of the project is to increase public trust in reproductive genomic technologies to prevent mitochondrial disease by developing a best practice framework for their use and implementation in Australia.

Project partners

  • Monash University
  • University of Sydney
  • Murdoch Children’s Research Institute

Funding

MRFF Genomics Health Futures Mission - Projects Grant Opportunity 2020-2022 $499,417

Outcomes

Public attitudes towards novel reproductive technologies: a citizens’ jury on mitochondrial donation.

Further Outcomes

15/03/2021: Submission to public Consultation on Legalising Mitochondrial Donation in Australia - Australian Government Department of Health. Dr Julian Koplin; Esther Lestrell; Dr Chris Degeling; Assoc Professor Karinne Ludlow; Professor Ainsley Newson; Professor Robert Sparrow; Dr Liz Sutton; Dr Narelle Warren; Professor Catherine Mills

 

Researchers

Dr Katarzyna Olcoń, Dr Delia Rambaldini-Gooding, Dr Chris Degeling,

Project Description

This study explores the perspectives, experiences, and challenges of maternal health service providers (e.g., midwifes, nurses and social workers) who work with refugee and migrant women in the Illawarra and South Western Sydney areas.

Refugee and migrant women are at higher risk of childbirth complications and generally poorer pregnancy outcomes. They also report lower satisfaction with pregnancy care because of language barriers, perceived negative attitudes among service providers and a lack of understanding of refugee and migrant women’s needs.

Our focus is on the tensions between providers’ requisite responsibility to uphold professional values and ethics, such as culturally competent service provision, and the structural barriers that preclude them from doing so.

Funding

UOW Faculty of the Arts, Social Sciences and Humanities Seed Funding, $4,000

Outcomes

Our research will identify the organisational and structural barriers experienced by providers in delivering culturally appropriate services, and the ways in which such barriers shape moral distress. The research will contribute to improving the quality of maternal health service delivery and ultimately better pregnancy outcomes for refugee and migrant women.

Researchers

Project led by Professor Emily Lancsar (Australian National University)

In collaboration with Professor Stacy Carter, Professor Joanne Coast (University of Bristol), Dr Marcus Sellars (Australian National University) and others

Project Description

Health Technology Assessment (HTA) is a formal process that is used to decide which drugs, services and devices are funded in healthcare systems.

In Australia, HTA for pharmaceuticals is done by the Pharmaceutical Benefits Advisory Committee (PBAC). In addition to determining whether drugs are safe and effective, PBAC has to decide whether they are efficient – that is, whether they offer good value for money. This generally involves the calculation of QALYs – Quality Adjusted Life Years. Applicants to PBAC use QALYs to calculate and express the benefits that would accrue from their drug being funded and available to the Australian public, which then allows a calculation of whether the drug would provide enough benefit to justify the cost.

PBAC often makes decisions about whether to fund drugs for use in children, but most research underpinning the calculation of QALYs is done with adults. This means it’s difficult for committees to know how to make decisions about children.

This project responds to a request from PBAC for new Australian research to support and inform its decision-making about funding drugs for children. ACHEEV is involved in a qualitative component of the work, speaking to a wide range of stakeholders—including young people themselves—about the value of health in children.

Funding

MRFF Preventive and Public Health Research 2019 Targeted Health System and Community Organisation Research (Round 3) 2020-2024 $2,215,268

Related ACHEEV Projects