Sydney Health Literacy Lab
L-R: Danielle Muscat; Julie Ayre; Kristen Pickles; Shannon McKinn; Rachael Dodd; Kirsten McCaffery; Rachel Thompson; Tom Dakin; Hilary Cox; Olivia Mac; Jenna Smith; Lesley-Ann Hellig; Kristie Weir; Tessa Copp; Stephanie Zwi; Erin Cvejic; Ling Zhang
Director: Kirsten McCaffery PhD
Kirsten is a behavioural scientist and a National Health & Medical Research Council (Australia) Professorial Research Fellow. She has an international reputation in the areas of health literacy, shared decision making and overdiagnosis research. She is Director of the Sydney Health Literacy Lab, a team of 16 behavioural scientists, and established the Charles Perkins Centre International Health Literacy Research Network with over 200 members worldwide. She leads Psychosocial Research within Wiser Healthcare, an NHMRC funded research collaboration at the Sydney School of Public Health that seeks to understand the causes and consequences of overdiagnosis/overtreatment and develop solutions to this growing global problem. She is an executive member of the ASK-GP Centre for Research Excellence (rapid evidence for GP decisions) and Academic Lead of Research within the School of Public Health. She has >190 publications and 10 book chapters, and has been awarded >50 research grants.
Deputy Director: Jesse Jansen PhD
Jesse Jansen is a behavioural scientist (MA Cognitive Psychology – Cum Laude; PhD Health Psychology) working in public health. She is senior Research Fellow and Sub-Dean (Early Career Researchers) at the University of Sydney, Sydney School of Public Health. She is part of the NHMRC funded Wiser Healthcare Program (reducing overdiagnosis and overtreatment) and the ASK-GP Centre for Research Excellence (rapid evidence for general practice decisions). She is co-director (Public Health) for the Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), University of Sydney.
The overarching aim of her research is to achieve a better standard of healthcare that is sustainable, patient-centred and driven by evidence. She develops interventions to guide patients, families and health care providers through critical decisions across the lifespan, with a specific focus on shared decision making and health communication. Her research is multi-disciplinary and uses a range of qualitative and quantitative methods (e.g. video-observations, qualitative interviews, focus groups, experimental studies and randomised controlled trials), strongly rooted in behavioural science. She works primarily in the area of ageing, cancer and primary care. Current projects focus on communication and decision making around topics such as appropriate prescribing of medications for older adults, breast cancer screening, contralateral prophylactic mastectomy and polycystic ovary syndrome (PCOS).
Post-doctoral Research Fellows
Carissa Bonner PhD
Carissa’s research focusses on cardiovascular disease, primary care, behavioural science, implementation and e-health. Her NHMRC/Heart Foundation fellowship involves developing new online systems to implement general practice guidelines. This will involve linking guidelines to updated evidence summaries, audit and feedback activities and patient decision aids, with a focus on cardiovascular disease prevention. Her work uses mixed methods including:
- Qualitative (interview, think aloud, content analysis)
- Quantitative (systematic review, survey, experiment, pre-post piloting, RCT)
Doctors and patients can too easily fall into decision making traps that result in some people missing out on useful medications, while other people end up taking medications that they don’t need. Carissa is a behavioural scientist and her research aims to find the best ways to communicate information about health risks, so that doctors and patients can make informed decisions. Specifically, her interests include risk perception, doctor-patient communication and medical decision making, and you can find me discussing these issues on twitter (@carissa_bon).
Erin Cvejic PhD
Erin is a biostatistician and postdoctoral researcher with expertise in experimental psychology and research interests in biopsychosocial predictors of both good and ill health. His doctoral training was complemented by a postdoctoral position in psychoneuroimmunology at UNSW Sydney- during which time he retrained in biostatistics, leading to his current position as a Lecturer in Biostatistics in the School of Public Health at the University of Sydney. Erin consults part-time for SHLL, providing biostatistical advice, mentoring and supervision for honours students, PhD candidates and postdoctoral researchers within the group across the broad range of research topics and projects, with contributions from initial study design through to final analysis.
Rachael Dodd PhD
Rachael is a postdoctoral research fellow with expertise in communicating about HPV and its relationship to both head and neck cancer and cervical cancer. Rachael is interested in how we can communicate about changes to screening programs to the public without undermining confidence. Rachael’s current studies involve qualitative work with women and health professionals about the changes to the Australian National Cervical Screening Program. Rachael will also conduct experimental studies examining how to communicate about screening programs and women’s preferences for treatment of cervical abnormalities.
Jolyn Hersch PhD
Jolyn is a postdoctoral researcher with expertise in communicating about overdiagnosis, particularly in breast cancer screening, and in the development and evaluation of decision support tools. Her training spanned cognitive and health psychology through to public health. Jolyn is interested in improving how we communicate about the issues of overdiagnosis and overtreatment to the public. Currently her main studies include a longitudinal randomised controlled trial of a decision aid about breast cancer screening, and a qualitative study exploring views about management of low-risk ductal carcinoma in situ (DCIS) among older women.
Danielle Muscat PhD
Danielle Muscat is a Post-Doctoral Research Fellow and Westmead Lead of the Sydney Health Literacy Lab. Danielle’s work is focused on improving health literacy among socially disadvantaged groups to empower them to be active participants in decisions about their health. Her doctoral work involved the development and evaluation of a world-first health literacy program for Australian adults attending adult basic literacy courses at TAFE across NSW. Danielle has continued this work in her post-doctoral role. She currently leads a project to standardise the delivery of Chronic Kidney Disease (CKD) patient education programs to enable informed choice and shared decision-making in planning care pathways among haemodialysis patients with lower health literacy and/or from culturally and linguistically diverse backgrounds. She is also coordinating a parental health literacy program designed to improve health literacy and health outcomes for parents and babies in the diverse communities of western Sydney.
Kristen Pickles PhD
Kristen Pickles is a postdoctoral researcher with the Wiser Healthcare research collaboration at the Sydney School of Public Health. Her research focus is prostate cancer screening, including doctor-patient-public communication, overdiagnosis, uncertainty, and informed decision making. Kristen has training in public health and psychology and expertise in qualitative research methods (grounded theory), quantitative survey design, and systematic review. Her current projects include a randomised trial evaluating two patient decision aids to support informed choice about PSA screening and a qualitative pilot study evaluating the implementation of a decision aid for women with early-stage breast cancer considering contralateral prophylactic mastectomy.
Rachel Thompson PhD
Rachel is a behavioural scientist who was trained in Health Psychology at The University of Queensland, completed a postdoctoral fellowship in Shared Decision-Making at Dartmouth College, and now serves as a Senior Research Fellow in the ‘Ask Share Know’ and ‘Wiser Healthcare’ Centres for Research Excellence at The University of Sydney. Rachel conducts research that seeks to enable all people to access health care that is evidence-based and aligned with their preferences and values. She has particular expertise in the areas of reproductive and perinatal health. Her recent work includes leading a multi-centre cluster randomised trial to evaluate the comparative effectiveness of shared decision-making interventions in contraceptive care and editing the third edition of the book, Shared Decision Making in Health Care: Achieving Evidence-Based Patient Choice (Oxford University Press, 2016).
Julie is a PhD candidate in the Sydney School of Public Health, University of Sydney, supervised by Professor Kirsten McCaffery, Dr Carissa Bonner and Professor Don Nutbeam. Her PhD explores how apps for diabetes self-management can be adapted for people who have lower health literacy. This body of work will inform the design of an app developed by Western Sydney Diabetes.
After undertaking Honours in Psychology at the University of Sydney, Tessa commenced her PhD in July 2016 in the School of Public Health, under the supervision of Dr Jesse Jansen, Professor Kirsten McCaffery, Dr Jolyn Hersch and Professor Jenny Doust. Tessa’s research consists of a four-part mixed-methods study, investigating the potential areas and pathways leading to overdiagnosis of Polycystic Ovary Syndrome (PCOS) and the impact of the PCOS disease label on psychosocial outcomes and decision making. The diagnostic criteria for PCOS has expanded with limited evidence of benefit or assessment of the potential for harm. This has contributed to a substantial increase in the number of women diagnosed. The first two stages will consist of qualitative investigations regarding (1) the views and experiences of clinicians who diagnose and manage PCOS, and (2) the impact of the diagnosis on psychosocial wellbeing and lifestyle from the patient perspective, for women with both mild and more severe manifestations of symptoms associated with PCOS.
Lesley-Ann is a PhD candidate in the field of prostate cancer active surveillance with the Wiser Healthcare research collaboration at the Sydney School of Public Health at the University of Sydney. Lesley-Ann is investigating how to increase the proportion of men with low-grade prostate cancer appropriately considering active surveillance over more radical treatments and then staying, when appropriate, on active surveillance.
Lesley-Ann has 30 years of senior management experience She has held senior executive, advisory and consulting roles, serving the profit, not-for-profit and public sectors in Australia and in Europe. She has focused on the health care and aged care sectors and has held senior roles at McKinsey & Company, The Benevolent Society, The Balmoral Partnership and Accenture. Lesley-Ann has most recently been serving as a leader in McKinsey’s Public and Social Services Practice.
Lesley-Ann has: a BA Honours and a Masters in Chemistry from Oxford University; a Master of Business Administration from INSEAD, France, where she was a Louis Frank scholar; and a Master of Public Health, with high distinction from the University of Sydney.
Shannon McKinn is an experienced qualitative researcher, and final year PhD candidate, in the Sydney School of Public Health. Her PhD research focuses on community health literacy and communication in the maternal health setting in Dien Bien Province, Vietnam. She is also working on studies exploring overdiagnosis and prenatal testing. She has a passion for global health, and research that address health inequities. Shannon has a Bachelor of International Studies from UNSW and a Master of International Public Health from the University of Sydney. She has worked as a research assistant in the Sydney School of Public Health since 2011, and has taught in the MIPH program since 2015.
Brooke Nickel is a PhD candidate interested in understanding the psychosocial aspects of cancer diagnosis and treatment, with a specific area of interest in examining how different terminologies or labels for low risk cancers impact experiences of diagnosis, treatment decision making and psychological outcomes. Her research currently focuses on thyroid cancer, ductal carcinoma in situ (DCIS) and prostate cancer and includes qualitative research (interviews, focus groups and content analyses), quantitative survey and Discrete-Choice Experiment (DCE) research, and systematic reviews.
Kristie Weir is a PhD candidate at the University of Sydney’s School of Public Health under the supervision of Dr Jesse Jansen, Professor Kirsten McCaffery and Associate Professor Vasi Naganathan. Her PhD involves developing and testing a communication tool to support shared decision making with older adults in the context of polypharmacy. She has a background in science and public health, completing her MPH in 2016 at the University of New South Wales. Her research interests focus on health communication and decision making to promote patient involvement and appropriate prescribing of medications for older adults.
Isabelle completed a Master of Public Health from the University of Sydney, and currently works as a Research Assistant to Dr Jesse Jansen. She is currently involved in a pilot study testing a communication tool that aims to support shared decision making between older people, GPs and pharmacists about optimal medicine use in accordance with patient goals and preferences.
Hilary joined SHLL as EA to Kirsten McCaffery in May 2018. Hilary has over 20 years’ senior level administrative experience at the University of Sydney in pure and applied medical research areas in addition to general tertiary administration.
Tom is the Senior Administration Officer for the Sydney Health Literacy Lab (SHLL) and Wiser Healthcare (Sydney). He has worked at the University of Sydney since 2015, and prior to that spent ten years working in medical administration, his last position managing a busy multidisciplinary practice in London.
Passionate about public health, social justice, and the power of narratives to bring about meaningful change, Tom has a Master of Film Studies and is currently studying part-time for his Master of Public Health. He hopes to continue channelling these interests to support the work of the SHLL and Wiser Healthcare as agents of social change.
Michael was an Associate Lecturer in Biostatistics and Epidemiology with the School of Public Health before working with Dr Carissa Bonner on her research focussing on cardiovascular disease, primary care, behaviour science and implementation and e-health. Since working with Carissa, Michael has worked with Dr Jesse Jansen on exploring the quality of deprescribing patient education materials that support decision making.
Currently, Michael is also a full-time Master of Teaching (School Counselling) student with a research interest in the mental health literacy of young people, aged under 25, and the extent to which this supports or hinders early help seeking-behaviour and treatment choices.
Jenna completed Honours in Psychology at the University of Sydney and is now a Research Assistant to Jesse Jansen and Kirsten McCaffery. She is continuing work on her Honours project, researching older adults’ decision making about cancer screening. As guidelines now counterintuitively recommend when older people might want to stop screening, Jenna examines different strategies for GPs to communicate this recommendation. Jenna is also currently involved in an experimental study examining attitudes and stigma around weight and Polycystic Ovary Syndrome (PCOS).
Stephanie is a Research Assistant working on the SUCCESS project, aimed at building health literacy capacity and enabling shared decision-making in patients with Chronic Kidney Disease (CKD) including those with lower health literacy. Stephanie completed her undergraduate degree in Advanced Science at the University of New South Wales, majoring in Neuroscience. In 2018 she completed Honours at the Garvan Institute of Medical Research, investigating mechanisms of dopamine neuron regeneration in zebrafish. With a keen research interest in public health and education, Stephanie has joined the team to learn about health inequities and gain hands-on experience in qualitative research.