Current Projects

Sydney Health Literacy Lab COVID-19 Group


Awareness, Attitudes, Actions and Outcomes related to COVID-19

COVID-19 was declared a global pandemic by the World Health Organisation in March 2020. Countries worldwide, including Australia, have taken unprecedented restrictive measures in response to the outbreak, to slow the spread of infection. This online study will assess (1) public understandings of health messages, knowledge, attitudes, and behaviours related to COVID-19, and (2) impacts on social and psychological wellbeing over a 12-month period. Participants will be recruited via social media or by a market research company. We will explore results by health literacy and socio-demographic variables. Findings will be compared to similar surveys running in the US and UK.

Team: Julie Ayre, Carys Batcup, Carissa Bonner, Tessa Copp, Samuel Cornell, Erin Cvejic, Rachael Dodd, Jennifer Isautier, Olivia Mac, Kirsten McCaffery, Danielle Muscat, Brooke Nickel, Kristen Pickles

Collaborators: Michael S Wolf – global survey lead (Northwestern University, USA) and Katie Robb (University of Glasgow, UK)


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Carissa Bonner PhD


CHAT-GP: Improving Communication about Heart disease risk Assessment using Translational research strategies in General Practice

The CHAT-GP project is a partnership with the National Heart Foundation of Australia, Royal Australian College of General Practitioners, and the Prevention Centre; with additional NHMRC and Federal Government funding. It aims to improve communication about heart disease risk assessment in general practice. We are investigating this issue from three perspectives:

  • GPs: This entails developing and testing implementation strategies for new eHealth tools to support evidence-based, shared decision making about cardiovascular disease prevention. We have created a novel online version of the current Australian cardiovascular disease prevention guidelines, co-designed with General Practitioners, to automatically apply assessment and management guidelines to patients during a consultation, and provide patients with a tailored decision aid to more clearly explain their risk and management options:
  • Patients/consumers: We are developing and testing a new version of the national CVD risk and heart age calculators to address the needs of people with lower health literacy. The new tool enhances current versions with evidence-based behaviour change techniques and health-literate design principles. Furthermore, we have recently received funding to co-design a tailored version of the above resources to support shared decision making in Aboriginal and Torres Strait Islander communities, due to commence in 2021 with the Australian National University.
  • Primary Health Networks (PHNs): To determine implementation strategies for these new eHealth tools, we are currently exploring the needs of PHNs, mapping national activities in CVD prevention, and testing new strategies to include eHealth tools via clinical decision support software (e.g. HealthPathways, Pen CS clinical audit tools).

Read more about this project here.

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Julie Ayre PhD


Health-literate action plan studies

This project involves two experimental studies which investigate how the universal precautions approach to health literacy (that is, simplifying materials for all consumers) relates to behaviour change for self-management behaviours. This was explored in the context of an action plan intervention to reduce unhealthy snacking. The results from the first study has highlighted the importance of tailoring action plans for the consumer’s health literacy level. The second study is in progress and will evaluate this tool in a clinical sample, and will also evaluate the most appropriate method to assign a tool to a consumer (for example, allowing the consumer to choose their preferred tool, or to use a health literacy screening item).

Collaborators: Robin Turner (University of Otago, NZ), Stephen Walter (McMaster University, Canada)

View snacking action plan

Diabetes smartphone apps in Western Sydney

This project consists of two qualitative studies which examine GP and patient attitudes towards a diabetes self-management smartphone app that links the patient to their GP. Interviews were conducted in Western Sydney, a region of Sydney that has a notably high prevalence of type 2 diabetes and whose population has high cultural and linguistic diversity, and lower health literacy. Findings have highlighted key barriers to implementation and opportunities to maximize GP engagement. Data collection for patient perspectives is currently in progress. Findings from these studies will inform the design and implementation method for a new diabetes app that is being developed by Western Sydney Diabetes, a collaborative effort between Western Sydney Local Health District and the Primary Health Network (WentWest).

Collaborators: Glen Maberly (Western Sydney Diabetes & University of Sydney), Sian Bramwell & Sharon McClelland (Western Sydney Diabetes), Rajini Jayaballa (Western Sydney Diabetes & University of Western Sydney)

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Tessa Copp PhD


Polycystic ovary syndrome studies

This program of work involves a number of qualitative and quantitative studies exploring the benefits and harms of a diagnosis of polycystic ovary syndrome (PCOS) and the potential for overdiagnosis.

Collaborators: Jenny Doust (University of Queensland), Ben Mol (Monash University)

Anti-Mullerian Hormone test studies

This program of work involves both qualitative and quantitative studies exploring attitudes, utility and experiences with the Anti-Mullerian Hormone (AMH) test. This project aims to increase evidence-based and patient-centred care, and reduce the use of unnecessary tests and treatments.

Collaborators: Jenny Doust (University of Queensland), Ben Mol (Monash University), Karin Hammarberg (Monash University), Sarah Lensen (University of Melbourne), Devora Lieberman (City Fertility, Sydney CBD)

Decision making regarding multiple cycles of in vitro fertilisation

This project involves qualitative methods to explore the psychological and external factors that influence decision making when undergoing in vitro fertilisation (IVF). The findings will inform future work in this area, with the aim of developing a decision tool to help couples when facing the difficult decision to stop or continue treatment.

Collaborators: Devora Lieberman (City Fertility, Sydney CBD), Deborah Bateson (Family Planning NSW)

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Rachael Dodd PhD

Academic Profile

Cervical screening studies

This program of work involves both qualitative and quantitative studies, which explore attitudes and understanding of reasoning for cancer screening changes, in particular focusing on the cervical screening program. The aim is to develop guidelines of how to communicate future changes to screening programs, which can be applicable internationally.

Active monitoring

This project uses experimental methods to examine acceptability of active monitoring as a management strategy for abnormal cells found on the cervix. The findings will inform future work in this area, with the vision to reduce overtreatment.

Collaborator: Dr Deborah Bateson (Family Planning NSW)

Musculoskeletal studies

These projects involve qualitative methods examining barriers and facilitators to high-value physiotherapy care, imaging campaigns in patients with low back pain, and the development of an app to evaluate the success of the Osteoarthritis Chronic Care Program.

Collaborator: Reuben Haupt (Sydney Local Health District)

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Jolyn Hersch PhD

Academic Profile

DCIS qualitative project including (a) interviews with clinicians, (b) focus groups with women in general community, and (c) interviews with DCIS patients, all incorporating exploration of views towards a potential new ‘active monitoring’ approach to managing low-risk screen-detected DCIS

This project aims to develop a better understanding diagnosis experience and management for low risk ductal carcinoma in situ (DCIS). Using qualitative interviews with relevant clinicians and women diagnosed with low risk DCIS, and focus groups with a community sample of women 50+ it investigates (i) understanding and experience of potential management options for low risk DCIS (e.g., active surveillance, surgical and radiotherapy options, endocrine therapy, lifestyle change), (ii) preferences and influences on decision making around management, and (iii) the overall feasibility of a clinical trial for active surveillance in low risk DCIS in Australia.

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Jesse Jansen PhD


APPEL implementation pilot conversation guide

This project aims to address the important issue of inappropriate use of multiple medicines in older adults by supporting evidence-based communication and shared decision making between older adults, their companions and clinicians. The Medicines Conversation Guide (‘the Guide’), was developed as a communication tool to be used by accredited pharmacists in the context of the Home Medicines Review (HMR) program. The Guide has been piloted for acceptability and feasibility among older adults, pharmacists and GPs, and the current implementation study is to ascertain its usefulness in clinical practice.

Collaborators: Aine Heaney & Debbie Rigby (NPS Medicinewise), Jim Colvin (Health Consumers New South Wales), Stacey Carter (University of Wollongong)

The implementation of a decision aid for women with early-stage breast cancer considering contralateral prophylactic mastectomy: a pilot study

This study aims to pilot test the implementation of a decision aid for women with early-stage breast cancer at average risk of CBC considering CPM. Our specific objectives are to (1) increase understanding of clinical contextual factors that impact on DA use; (2) obtain evidence about the acceptability, feasibility, and potential efficacy of the DA in clinical practice; and, (3) determine the optimal format (e.g. paper based, online) and timing for implementation (e.g. before, during consultation).

Collaborators: Phyllis Butow & Nicole Rankin (University of Sydney), David Porter (Auckland Hospital, NZ), Richard De Abreu Lourenco (UTS), Danielle Spence (BCNA), Dr Nick Zdenkowski (Calvary Mater Newcastle), Prof Christobel Saunders & Dr Rachael Glassey (The University of Western Australia)

Medico-legal drivers of defensive medicine

This project is investigating the problem of doctors offering unnecessary (or ‘low value’) healthcare, often in defence of potential threats of litigation from patients. There are two key aims: (1) to advance knowledge on psychosocial drivers of defensive practices and low value care in the Australian medico-legal context; and (2) to apply this knowledge in the development and testing of an intervention to promote clinicians’ understanding of the problem, enhance their communication skills and change their behaviour. Qualitative interviews will be conducted with a range of medico-legal expert groups and medical practitioners. A teaching and communication intervention for clinicians will then be piloted. The ultimate purpose of the project is to advance quality, safety and professionalism in clinician-patient relationships.

Collaborator: Nola Ries (UTS)

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Shannon McKinn PhD


Communication and health literacy in Dien Bien Province, Vietnam: experiences and perceptions of primary health care professionals and ethnic minority women

This project uses qualitative methods to investigate the experiences and perceptions of primary healthcare providers and ethnic minority women around communication in the maternal and child health setting and explore the nature of health literacy in a low-resource, culturally specific setting.

Overdiagnosis in Kids – prenatal genetic and genomic tests

This project will use a mixed methods approach to investigate the potential harms of genetic and genomic prenatal screening and diagnosis.

Collaborators: Wiser Healthcare, Menzies Centre for Health Policy (University of Sydney), Sydney Local Health District

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Danielle Muscat PhD

Academic Profile


We have developed a health literacy training program for new parents called Parenting+. The program embeds graded health literacy and shared decision-making skills across a number of health topics relevant to new parents. The feasibility of implementing the Parenting+ intervention across Western Sydney Local Health District was established in a 2018 pilot study funded by the WSLHD Research and Education Network Grant scheme. We will now employ an effectiveness-implementation hybrid design to examine the replicability and scalability of the project across three Local Health Districts (LHDs). This includes a cluster-randomised controlled trial of the Parenting+ intervention delivered within established New Parents Groups across WSLHD, SLHD and SWSLHD compared to standard parenting groups in these LHDs. The trial involves longitudinal data collection (6+12-months) to assess the impact on psychosocial outcomes, health service use and health outcomes. Qualitative methods will provide practical advice on implementation and adaptability of the intervention within and across the LHDs.

Collaborators: Western Sydney Local Health District, Sydney Local Health District, South Western Sydney Local Health District

Read more about this project here.


We have developed a model of care and a multi-component App-based intervention to build health literacy capacity and enable shared decision-making for Chronic Kidney Disease (CKD) patients including those with lower health literacy and/or from CALD backgrounds (SUCCESS). The App combines known effective behaviour change methodologies with best-practice health literacy principles to support shared decision-making across the Stage 5 CKD trajectory. The feasibility of implementing the intervention across four NSW LHDs was established in a study funded by Sydney Health Partners Medical Research Futures Fund. The next phase of the study will evaluate adaptation, expansion and extended efficacy outcomes (clinical and psychosocial).

Collaborators: Western Sydney Local Health District, Nepean Blue Mountains Local Health District, Sydney Local Health District, Northern Sydney Local Health District, Illawarra Shoal Haven Local Health District.

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Brooke Nickel PhD

Academic profile

Recalibrating low risk lesions

This project aims to engage the international pathology community to consider recalibration of the cancer diagnostic threshold and/or revisions to terminology used for low risk lesions, and 2) test proposed solutions in randomised cross over trials using hypothetical scenarios. This will be done by convening an international pathology symposium. A modified Delphi approach will be used to achieve consensus where we will work with key stakeholders – International Academy of Anatomical Pathologists, the Royal College of Pathologists of Australasia, the WHO Classification of Tumours Group, and others – to convene the symposium. Discussions on benefits and risks of proposed solutions for recalibration of diagnostic thresholds and/or changing terminology of low risk lesions, will be audio recorded and transcribed for thematic analysis. Following the symposium, we will undertake a series of randomised cross over trials using hypothetical scenarios to test the effects of proposed solutions on consumers.

Collaborators:  A/Prof Nirmala Pathmanadthan (Westmead breast Cancer Institute), Prof Richard Scolyer (Melanoma Institute Australia), Prof Graham Mann (Melanoma Institute Australia). Dr Peter Ferguson (Melanoma Institute Australia), Prof Peter Soyer (University of Queensland), Prof Sunil Lakhani (University of Queensland), Dr Murali Varma (University Hospital of Wales).

Cancer Relabelling Citizens’ Jury

This project will elicit the views of informed citizens by conducting three citizens juries across Australia on whether low risk lesions that have little chance of causing harm should still be called ‘cancer’. It will use low risk papillary thyroid cancer as an example and pose the question of whether this should also be considered for other forms of low risk cancers.

Collaborators: Dr Patti Shih (University of Wollongong), Prof Stacy Carter (University of Wollongong), Dr Chris Degeling (University of Wollongong), Dr Raw Thomas (Bond University)

Media analysis of calls to rename low risk cancers

The use of more medicalised labels can increase both concern about illness and the desire for more invasive treatment. We wrote an analysis article in The BMJ in 2018 to consider the potential implications of removing the cancer label for low risk lesions where there is evidence of overdiagnosis and previous calls to replace the term cancer. The article generated a large amount of high-profile media coverage, nationally and internationally. This study analyses the media’s coverage of the article and aims to understands how to better communicate the message of low risk cancers and overdiagnosis to the public.

Collaborators: Dr Ray Moynihan (Bond University), A/Prof Juan P Brito (Mayo Clinic)

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Kristen Pickles PhD

Academic Profile

Evaluating decision aids for prostate cancer screening

This project involves a quantitative and qualitative study which will assess and compare the acceptability and comprehensibility of two decision aids (one long and one abbreviated) to support Australian men with varying educational backgrounds to make informed decisions about PSA testing.

Collaborator: Prostate Cancer Foundation of Australia

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Kristie Weir PhD


APPEL: development and feasibility testing of a conversation guide

This project involves 1) a qualitative interview study with older adults and their companions to understand the needs of older adults, their companions and clinicians and identify potential facilitators and barriers to shared decision making about medicines and deprescribing. 2) The development and feasibility testing of the Medicines Conversation Guide in the context of a Home Medicines Review (HMR) with pharmacists and older adults. The Guide aims to increase involvement of older people in decisions related to polypharmacy, and support discussions about their goals and preferences. 3) Exploring GPs perspectives on the importance of discussing patient goals/preferences and if/how the information from the Guide can improve the HMR and help inform GP’s management of polypharmacy and deprescribing.

Collaborators: Aine Heaney & Debbie Rigby (NPS Medicinewise), Jim Colvin (Health Consumers New South Wales), Stacey Carter (University of Wollongong)

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