Community Juries
The community jury process is an effective way to involve citizens in developing a thoughtful, well-informed solution to a public problem or issue.
Community juries are a lot like juries in a court room. They are made up of about a dozen people, who meet over two days. They hear expert testimony and then deliberate to make a decision about what they think is the right thing to do. On the final day of their moderated hearings, the members of the Community Jury vote on the issues and give their recommendations.
Community Jury 1 – Should women aged 70-74 be invited to participate in screening mammography?
In Australia prior to 2013, only women aged 50-69 were invited to participate in in the government-funded breast screening program (BreastScreen). Health promotion messages and social marketing campaigns only targeted women aged 50-69. Women aged 70-74 were able to access free mammography screening services if they wanted to, but they did not receive invitations and screening was not actively promoted to them.
Since 2013, this has changed. The target age group for mammography screening was extended by 5 years, from 50-69 years to 50-74 years. Since this time Australian women aged 70-74 have been actively invited to participate. Health promotion messages and social marketing campaigns have also been targeted at women aged 70-74 to encourage them to participate in the program.
What we hoped to achieve
Our aim was to discover if women aged 70-74 think they should be in the target age group for mammography screening programs and understand their reasons for making this decision. In doing so we hoped to work out what approaches to communicating about breast cancer screening for women aged 70-74 are considered the most legitimate and fair, both for individuals concerned and for broader society.
We held two separate juries in Sydney, April 2017. Both juries were held at the University of Sydney. 34 women aged 70-74, of diverse cultural background and living in Greater Sydney, were randomly recruited by a professional research service to participate as jurors. Women with experience of a breast cancer diagnosis (themselves) or recent experience of a close family member having breast cancer (in the last 5 years) were excluded through a screening interview, as were health professionals and those working in breast cancer advocacy.
The questions put to the juries
In Part A we asked jurors if the government funded breast screening program needs to be changed in some way:
PART A: Which of these options does the jury endorse? The program should:
- Continue with the current program i.e. invite women and promote screening to women 70-74 to participate in the government-funded breast screening program without cost to participating women
- Revert to the previous screening program i.e. stop inviting women and stop promoting screening to women aged 70-74 to participate in the government-funded breast screening program.
In Part B we asked jurors to consider how their decision should be implemented:
PART B: During this jury process, you have heard a lot of information about breast screening in 70-74 year old women. Please consider the following questions, and provide reasons for your answers:
- Of the information you have heard, which is most essential to communicate to women 70-74 before they decide whether to participate in breast screening?
- When and how should these women be told about or given access to this information?
- What should we say to citizens and policymakers to convince them that your preferred option is the best option?
The evidence presented to the juries
Nehmat is a public health and breast physician, and Professor of Public Health & Breast Cancer Research Leadership Fellow at the Sydney School of Public Health. She is a consultant at the Royal Hospital for Women in Sydney, and has worked in breast clinical services for nearly 25 years. Nehmat has focused her career on breast screening and diagnostics, initially through clinical practice and then through combining research with clinical practice, and has an internationally-recognized portfolio in breast cancer research mostly in imaging.
The scope of Nehmat’s research includes new technologies, population screening, preoperative staging, screening women at increased cancer risk, and the effect of testing on clinical outcomes in women with breast cancer. She has experience in evidence synthesis, and has contributed to the development of international clinical guidelines in both early and advanced breast cancer. She has more than 190 peer-reviewed publications and has been the scientific lead on various international collaborative studies including trials of tomosynthesis (3D-mammography) screening, and is also leading a pilot trial of tomosynthesis screening in Australia’s population screening program. She is co-Editor of The Breast and co-Editor of two books on breast screening.
Jenny is Professor of Clinical Epidemiology in the Centre for Research in Evidence Based Practice in Bond University. She also works as a general practitioner in Brisbane. Her main research areas are diagnosis, screening and evidence based practice in general practice.
In addition to lecturing in subjects relevant to evidence-based care and general practice, Dr Doust has conducted extensive research into a wide range of diagnostic related issues and has received numerous grants through NHMRC and other institutes.
Sanchia was appointed CEO of Cancer Council Australia in August 2015. She has more than 30 years’ experience in cancer control as a clinician, researcher, educator and senior healthcare administrator. From her early career as a Registered Nurse in New Zealand she specialised in cancer and palliative care, completing a Bachelor of Applied Science, a Master of Nursing and a doctoral thesis exploring nurse-patient relationships in cancer and palliative care. She has extensive experience in health-system administration and most recently was Director of Cancer Services and Deputy CEO at the Cancer Institute NSW
As CEO of Australia’s peak non-government cancer control organisation, Professor Aranda is a strong independent voice on evidence-based cancer control. She is engaged in all fields of cancer from primary prevention through to survivorship and advanced care, and has a particular professional interest in improved ways to care for and support cancer patients.
Robin is a medical epidemiologist with a long-standing interest in women’s health. She has broad-based experience in women’s health epidemiology having previously worked at the Research Unit of the Jean Hailes Foundation, the Royal Women’s Hospital and the Perinatal Data Collection Unit of the Victorian Department of Human Services.
Robin is Deputy Director of the Women’s Health Research Program at Monash University. She has experience with designing, running and analysing randomised trials, cohort studies and case control studies. She is currently responsible for a 5-year study of over 1600 women with their first diagnosis of invasive breast cancer (currently funded by the BUPA Health Foundation). Other research interests in relation to women at midlife include urinary incontinence, cardiovascular disease and metabolic disturbance, bone and joint health and cognitive function.
Community Jury 2 – Thyroid Cancer Terminology Change
Should low-risk small papillary thyroid cancers that are very unlikely to cause harm be renamed and reclassified, so that they are no longer called cancers, and diagnosed as cancers?
Papillary thyroid cancer that is smaller than 1cm is a type of cancer that is considered low-risk – the chance for this type of cancer to spread or grow is very low, and therefore its potential to cause harm or death to the patient within their lifetime is also low.
Studies have shown that regularly monitoring low-risk small papillary thyroid cancers, rather than treating them straight away, also known as active surveillance, is an effective and less invasive way to manage these cancers. Yet many low-risk small papillary thyroid cancers in Australia and overseas are still treated with surgery, which may require hormone treatments and/or other side-effects that compromise the patient’s quality of life. This is an example of overtreatment – where patients receive treatments that are not needed, and cause more harm than benefit.
Terminology change – a contested debate
One possible solution to this issue might be to change the terminology used to refer to the condition, including the way it is classified, as not cancers. Those in favour of this change argue that the outcomes of this disease do not match what we normally understand as ‘cancer’, so they should not be called ‘cancer’. Studies suggest that treatment decisions are influenced by the terminology used by doctors in their conversations with patients. For example, if a patient is told they have ‘cancer’, they might be more likely to want more aggressive treatments. Changing the terminology and classification of this condition, so that it is more aligned with its expected outcome, might reduce psychological distress, rates of overtreatment and unnecessary harm.
However, other experts are strongly opposed to changing the terminology and classification of these cancers. They argue that the pathological definition of cancer is precise: cancer refers to abnormal cell growth, and that the cells that comprise these low-risk thyroid cancers show definite pathological features of cancer. By not classifying these conditions using the precise biological classification of ‘cancer’, the clear boundary between disease and non-disease might be blurred, and the risk of potential disease spread and the need for future follow-up care for individual patients may be compromised. While the issue of overtreatment is important, they argue, there are evolving and improving strategies such as enhanced community awareness to address this issue.
The role of community juries
With the contested debated about the justification of terminology change in low-risk small papillary thyroid cancers among experts, the views of an informed lay public about this topic are important to inform ways forward in healthcare research and policy-making.
Community juries is a deliberative research method that allows an informed, extensive, two-way engagement between topic experts and community jury members from more diverse geographic areas. The process and results of deliberation aims to provide value-based perspectives on the social and ethical dimensions of the complex issues around terminology change of low-risk small papillary thyroid cancers.
We convened three community juries in Sydney, Wodonga and Cairns between December 2019 and March 2020. We recruited 40 people from diverse backgrounds and ages.
Question we put to the jury:
Should low-risk small papillary thyroid cancers that are very unlikely to cause harm be renamed and reclassified, so that they are no longer called cancers, and diagnosed as cancers?
The evidence presented to the juries