Current Projects

Sydney Health Literacy Lab COVID-19 Group

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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)

Papers:

Preprints:

Selected media:

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Carissa Bonner PhD

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CARDIOVASCULAR DISEASE (CVD) PREVENTION

I am leading the CHAT-GP project, which aims to develop and implement new ehealth tools to support evidence-based, shared decision making about cardiovascular disease prevention. I am the Chief Investigator on several grants supported by NHMRC, Heart Foundation and federal government funding to develop and evaluate resources for:

  1. GPs and practice nurses: A new interface for the CVD prevention guidelines was co-designed with GPs 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: . This has been recommended by the Heart Foundation, NAACHO and Primary Health Networks.
  2. Consumers and patients: We developed and tested 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. It improved knowledge of CVD risk and lifestyle change over 1 month amongst people with varying health literacy needs.
  3. Primary Health Networks (PHNs): We are currently exploring the needs of PHNs, mapping national activities in CVD prevention, and testing new strategies for implementing communication tools via clinical decision support software (e.g. Healthpathways, Pen CS and POLAR clinical audit tools) and quality improvement programs (e.g. the national PIP QI program, GP education workshops in Western Victoria PHN).
  4. Aboriginal and Torres Strait Islander communities: We are working with representatives of NAATSIWHP, NAACHO and ACI to co-design a tailored version of the above resources to support shared decision making in Aboriginal and Torres Strait Islander communities. I am supervising Judith Parnham to do her MPhil as part of this project.

Example CVD paper

DIABETES SELF-MANAGEMENT

I am involved in several projects to improve diabetes self-management, primarily through supervising PhD candidates Julie Ayre and Sumathy Ravi, and acting as Chief Investigator on a Diabetes Australia grant:

  1. Diabetes Australia project: This project tested how health-literate design principles can be used to improve action plans to reduce unhealthy snacking behaviour amongst people with diabetes and obesity. The intervention was found to improve adherence to planned diet changes, and is currently being integrated into broader programs in partnership with Diabetes NSW and the Heart Foundation. This project is led by Julie Ayre.
  2. Western Sydney Diabetes Gateway project: We advised on health-literate design principles and behaviour change techniques to be used in a diabetes self-management app for culturally and linguistically diverse communities in Western Sydney, and are now exploring virtual care models for diabetes management. This project is led by Sumathy Ravi.

Example diabetes paper

INFECTIOUS DISEASE PREVENTION

I am involved in two collaborations to improve infectious disease prevention, advising on behavioural science aspects of the following projects:

  1. VBAT project: This NHMRC funded project aims to develop and validate the Australian Vaccine Barriers Assessment Tool, to enable health services to identify and address key barriers to parent uptake of childhood vaccination. I am advising on behaviour change theory to ensure that the tool covers all possible drivers of behaviour, broadly based on the COM-B model: capability (e.g. knowledge, skills). opportunity (e.g. cost, access), and motivation (e.g. habits, attitudes).
  2. National COVID-19 studies: I am involved in the Sydney Health Literacy Lab (SHeLL) longitudinal survey and spin off projects to track national responses to current and emerging COVID-19 restrictions and recommended prevention behaviours. This has included identifying communication issues for people with lower health literacy and culturally diverse background, identifying and addressing barriers to COVID-19 testing and vaccination, and tracking changes in knowledge, attitudes and behaviour over time.

Example infectious disease paper

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Julie Ayre PhD

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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

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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

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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

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Informing women about overdiagnosis in breast cancer screening

This is a randomised trial with longitudinal quantitative and qualitative follow-up, examining how information on overdiagnosis influences women’s decision making about breast cancer screening.

  1. Hersch J, Barratt A, McGeechan K, Jansen J, Houssami N, Dhillon H, Jacklyn G, Irwig L, McCaffery K. Informing women about overdetection in breast cancer screening: Two-year outcomes from a randomized trial. Journal of the National Cancer Institute. 2021 Nov 2: 113(11): 1523-1530.
  2. Hersch J, McGeechan K, Barratt A, Jansen J, Irwig L, Jacklyn G, Houssami N, Dhillon H, McCaffery K. How information about overdetection changes breast cancer screening decisions: A mediation analysis within a randomised controlled trial. BMJ Open. 2017 Oct 6; 7(10): e016246.
  3. Hersch J, Barratt A, Jansen J, Irwig L, McGeechan K, Jacklyn G, Thornton H, Dhillon H, Houssami N, McCaffery K. Use of a decision aid including information on overdetection to support informed choice about breast cancer screening: A randomised controlled trial. Lancet. 2015 Apr 25; 385(9978): 1642-1652.
  4. Hersch J, Jansen J, Barratt A, Irwig L, Houssami N, Jacklyn G, Thornton H, Dhillon H, McCaffery K. Overdetection in breast cancer screening: Development and preliminary evaluation of a decision aid. BMJ Open. 2014 Sep 25; 4(9): e006016.
  5. Hersch J, Barratt A, Jansen J, Houssami N, Irwig L, Jacklyn G, Dhillon H, Thornton H, McGeechan K, Howard K, McCaffery K. The effect of information about overdetection of breast cancer on women’s decision-making about mammography screening: Study protocol for a randomised controlled trial. BMJ Open. 2014 May 15; 4(5): e004990.
  6. Hersch J, Jansen J, Barratt A, Irwig L, Houssami N, Howard K, Dhillon H, McCaffery K. Women’s views on overdiagnosis in breast cancer screening: A qualitative study. BMJ. 2013 Jan 23; 346: f158.
  7. Hersch J, Jansen J, Irwig L, Barratt A, Thornton H, Howard K, McCaffery K. How do we achieve informed choice for women considering breast screening? Preventive Medicine. 2011 Sep; 53(3): 144-146.

Management of low-risk ductal carcinoma in situ (DCIS)

This project involves qualitative studies with a range of stakeholders, focusing on exploring communication and decision making around managing screen-detected low-risk DCIS.

  1. Nickel B, McCaffery K, Houssami N, Jansen J, Saunders C, Spillane A, Rutherford C, Dixon A, Barratt A, Stuart K, Robertson G, Hersch J. Views of healthcare professionals about the role of Active Monitoring in the management of Ductal Carcinoma in Situ (DCIS): Qualitative interview study. Breast. 2020 Dec 1; 54: 99-105.

Ensuring ethical and flexible consent in cancer genomic research and clinical practice

The goal of this new project is improving informed consent around genomic testing in cancer by developing and piloting an innovative intervention for COnsent in GENomic Testing (CoGenT).

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Shannon McKinn PhD

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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

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Parenting+

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.

SUCCESS

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

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Low risk cancer communication

This program of work uses quantitative and qualitative research methods to examine how different labels for low risk cancer (thyroid, breast, prostate) impact treatment decision making and patient outcomes. It aims to engage patients and clinicians, including pathologists, to consider the recalibration of the cancer diagnostic threshold and/or revisions to terminology used for low risk lesions, and to test proposed solutions which can be implemented into policy and practice internationally.

Breast density

This mixed methods program of work aims to understand the impact of breast density notification on women, clinicians and health services in Australia. It will provide comprehensive and timely evidence to key national health bodies and screening services about how to tackle the urgent emerging issue of notifying women about their breast density, and the lasting impact this notification will have.

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Kristen Pickles PhD

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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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