CeMPED SDM Hub group members
The following are core members of the Shared Decision Making Hub in alphabetical order.
- Professor Alexandra Barratt
- Carissa Bonner
- Professor Phyllis Butow
- Dr Haryana Dhillon
- Nasser Dhim
- Jolyn Hersch
- Dr Jesse Jansen
- Dr Ilona Juraskova
- Associate Professor Julie Leask
- Kat Leung
- Associate Professor Kirsten McCaffery
- Shannon McKinn
- Dr Heather Shepherd
- Professor Martin Tattersall
- Associate Professor Lyndal Trevena
- Adam Walczak
- Dr Kerrie Wiley
- Dr Hal Willaby
Alexandra has led research projects in breast and prostate cancer screening over the last 20 years, including trials of decision aids for people considering cancer screening tests. She now combines her work in cancer screening and shared decision making with research in broader issues affecting women’s and men’s reproductive health.
Alex has worked as a consultant for the National Breast Cancer Screening Initiative of Canada, the US National Cancer Institute, NHMRC, the National Breast and Ovarian Cancer Centre and the Ministry of Health NZ. She has co-authored over 100 publications in peer reviewed journals, and has contributed to text books in Evidence Based Medicine and Public Health.
Carissa has spent the last eight years researching psychological aspects of health at the University of Sydney, the University of NSW and in research consultancy with a focus on decision making and risk communication from a cognitive psychology perspective. Carissa’s previous experience in shared decision making includes the development and evaluation of patient decision aids for cancer treatment and clinical trial participation. Currently, Carissa’s is investigating in her PhD how GPs and patients make decisions about cardiovascular disease (CVD) prevention, through either lifestyle change or the use of preventive medication. Current guidelines advocate decision making based on absolute risk thresholds - the probability of a cardiovascular event over a period of time, based on multiple risk factors. However, the use of absolute risk assessment in practice is limited, GPs find it difficult to explain to patients, and patients may prefer a different approach to what is recommended in the guidelines. Carissa’s research aims to determine the factors that are important to GPs and patients when deciding about CVD risk management, in order to identify ways in which CVD prevention might be improved. Carissa is particularly interested in the role of risk communication in shared decision making, and the cognitive mechanisms underlying the effect of shared decision making interventions, such as decision aids.
Professor Phyllis Butow is an NHMRC Principal Research Fellow and Director of the Medical Psychology Research Unit at the University of Sydney. She has worked for about 15 years in the areas of Psych-Oncology and doctor-patient communication and plays an active role in promoting these issues within the cancer community. Phyllis chairs the Communication Skills Training sub-group within the National Breast Cancer Centre, sits on the Research Committee of the NSW Cancer Council Cancer and is a member of the Medical and Scientific Reference Group of the Breast Cancer Network. Particular interests include health professional-patient communication, shared decision-making, psychosocial predictors of the development and outcome of cancer and support needs of patients with cancer.
Haryana is currently undertaking a research project entitled ‘Understanding and improving cancer communication and decision making among patients with low education and literacy.
Patients with cancer are increasingly expected to process complex medical information and make decisions about their treatment and follow-up care. There is growing concern that many patients do not have the health literacy skills to do this effectively. While there have been major advances to inform and involve patients with cancer in treatment decision making, there has been little research with patients who have lower health literacy. This is an important group who have limited health knowledge and experience poorer health outcomes. Haryana’s aim is to identify ways to improve patient understanding and involvement in cancer consultations, particularly among patients with low health literacy. This study has three main components. Firstly, to interview health professionals about health literacy; secondly, to screen and interview patients of lower health literacy; and finally, to audio-record consultation between radiation oncologists and patients.
Nasser Dhim is interested in smartphone applications for health consumers, and more generally in E-health application for health consumers. Nasser’s work is currently focused on the feasibility and effectiveness of smartphone applications for health consumers in smoking cessation and depression. The feasibility stage has been recently finalised and was examining the uptake and user characteristics of smoking cessation app and depression screening and monitoring app, in both Apple and Android app stores.
The effectiveness of smoking cessation apps will be soon examined in a new project that is planned to start in July 2013. The project will compare standard smoking cessation method (information only) with a decision making method plus following up the result of the decision on long term and also monitor decision changes over the follow up period. Although this study involves some shared decision making (SDM) in the intervention group, we are not currently looking at SDM as the main outcome. However, the outcomes of decisions that involve SDM are documented to be analysed.
Jolyn is currently researching women’s responses to information about overdiagnosis in breast cancer screening. Overdiagnosis (detection and treatment of inconsequential disease) is now recognised as a significant harm of breast cancer screening. Reasonable individuals who understand the complex array of potential positive and negative consequences of participating in screening may vary in their screening choices, depending on how they personally value the chance of benefit versus the risk of harm. However, materials currently distributed by breast screening providers worldwide generally lack information about overdiagnosis, and consequently the public is largely unaware of this issue. Evidence is therefore needed on how best to inform women about overdiagnosis when they are considering screening.
Using a combination of qualitative and quantitative methods, this project examines how evidence-based information about the nature and extent of overdiagnosis in breast screening may influence women’s decision making about screening, as well as exploring the impact of this information on a range of psychosocial outcomes. The findings from this research will contribute important evidence to assist with the development of screening information materials that provide more balanced communication and better support women to make informed choices.
Shared decision making (SDM) is about supporting people to make health decisions that take into account their personal values and preferences when fully informed of the options and their potential harms and benefits. SDM is particularly important when it comes to preference-sensitive decisions, and participating in breast cancer screening may be considered such a situation. This research project focuses on developing and evaluating balanced breast screening information materials that could facilitate the decision making process for women in the community.
Jesse’s research focuses on health communication and decision-making in different clinical areas, such as cardiovascular disease prevention and mammography screening. Jesse uses a range of research methods including video-observations, qualitative interviews, experimental studies and randomised controlled trials. The ultimate aim of her research is to optimize health communication and decision-making by developing practical interventions for patients as well as clinicians.
Jesse has a special interest in (shared) decision-making among older adults and their clinicians. The case for shared decision-making among older adults is particularly strong for several reasons. Decision-making for this group is often very complicated, it involves the weighting of many different factors, and there is lack of clinical evidence to base decisions on. To add, heterogeneity increases with age and older adults’ preferences will vary widely depending on for example their frailty, level of education, cognitive and health status. The decision-making process therefore needs to be highly individualized.
I have a broad base of research interests within the field of Health Psychology. These include: doctor-patient communication, medical decision-making and risk communication, treatment outcomes (psycho-sexual adjustment in particular), HPV vaccination, and evaluation of health services. My specific research interest lies within the discipline of Psycho-Oncology.
Julie Leask is a social scientist specialising in immunisation-related behaviours and perceptions. Her NHMRC Career Development Fellowship is looking at ways to improve communication about vaccination in public and clinical settings. Julie has a particular interest in applying the principles of shared decision making to immunisation, including the development and evaluation of vaccine decision aids and more recently, option grids.
Kat is a registered nurse as has been working for the public and private health sectors in the New South Wales State of Australia for almost 20 years. Kat is a nurse academic working for two educational institutions in Sydney and a doctoral candidate at the University of Sydney researching on evidence-based practice competence assessment in nursing practice. Kat is also a clinical assessor involved with competence assessment of nurse clinicians in NSW since 2000.
Kat has a special interest in evidence-based practice competence assessment especially in evaluating the psychometric properties of current assessment tools and is passionate in developing a valid and performance-based evidence-based practice assessment tool for the nursing profession. Kat is at the early stage of pilot-testing the new tool and would be able to share her knowledge and insight with other academic staff across healthcare disciplines in the near future.
Heather is an early career health communication researcher with qualifications in health and language studies, a clinical background in nursing and a doctorate in Psychological Medicine. At the beginning of her research career she focused on aspects of shared decision making from the health professionals perspective and was awarded my PhD from the Faculty of Medicine at Sydney University in 2008, thesis entitled “Involving patients in treatment decision-making: the views and attitudes of Australian cancer doctors to shared decision-making”. In 2009 Heather was awarded a full-time NHMRC Public Health Postdoctoral Fellowship, continuing to work on projects that investigated and evaluated tools and intervention to support patient and consumer involvement in health decision making and promote the use of evidence-based medicine and the applications of the evidence to the individual in consultations. Heather’s previous studies and clinical experience demonstrated the importance of communication for patients, their families and staff. These experiences underpin Heather’s commitment to developing and promoting health literacy in cancer care. Heather’s current research interests include shared decision-making, doctor/patient communication, evidence-based medicine, health professionals’ perspectives, and development and evaluation tools to support health literacy and empowerment.
Heather’s most recent work in the SDM field has been work evaluating three questions to promote SDM and evidence-based medicine funded by the Informed Medical Decisions Foundation. We conducted a cross over trial which demonstrated the effectiveness of the three questions and have recently completed a feasibility study in a sexual and reproductive health clinic in Sydney, using video clips and tablet technology to deliver the three questions intervention and a consumer friendly developed as part of the study website www.askshareknow.com.au. Links to this website have been requested and adopted by consumer and healthcare groups including the Consumers Health Forum of Australia, Arthritis Australia and Health Consumers Alliance of South Australia.
I am also involved in a project with colleagues in Dartmouth, United States to test the 3 questions intervention and a clinician targeted intervention to promote SDM and am part of a research team for projects here in Sydney looking at development and evaluation of an Australian adult health literacy program for socially disadvantaged adults attending TAFE. Since starting my position at the Surgical Outcomes research centre in December 2013, I am also developing research projects to incorporate SDM and promote patient involvement in the surgical field.
Martin is currently researching and evaluating in a randomised controlled trial the effect of a formal advance care planning intervention on the documentation of incurable cancer patients wishes, compliance with known end of life wishes and the quality of death. The intervention aims to promote discussion between patient and carer and the health care team about life expectancy and end of life issues and to promote documentation of the patient's preferences for continuing and end of life care which will be countersigned by the oncologist.
As a key member of CeMPED and an active general practitioner, Lyndal’s main research interest is the application of evidence in general practice, particularly in evidence-based clinical decision-making. She is particularly interested in preventive primary care strategies in disadvantaged groups & has worked with homeless people low literacy groups and more recently in low income country settings. She continues to develop and evaluate a number of decision tools and clinical practice guidelines which assist clinicians and patients to individualise population-level research into practice. Much of this work has been in cancer and other disease prevention. More detail about this research program can be found at http://www.psych.usyd.edu.au/cemped/.
Since joining CeMPED in 2009, Adam has coordinated an NHMRC study evaluating a Communication Support Intervention for advanced cancer patients and their caregivers and undertaken a PhD, supervised by Prof. Phyllis Butow and A/Prof. Josephine Clayton. Adam has previously worked on a clinical therapy study for child and adolescent behavioural and emotional difficulties at the University of New South Wales and completed a BPsych (Hons) at Macquarie University, investigating individual indicators of health risk driving behaviours and concordance between self-report and driving simulator assessments of risk behaviour. Adam’s research interests include the management and psychosocial impact of severe, life-limiting or chronic illness on quality-of-life and treatments and communication resources that can reduce health system, family and patient burdens.
Adam’s work at CeMPED aims to further understand and improve communication between patients, caregivers and health professionals regarding challenging topics including life expectancy and goals and preferences for care at the end-of-life. The communication support intervention aims promote such discussions early in the final year of life, in concert with consideration of further chemotherapy, radiotherapy or surgery and prior to crisis admission to palliative care. By enhancing and normalising communication about these issues, we hope to promote shared decision-making and knowledge about care goals and treatments between patients, caregivers and oncologists. Through enhanced end-of-life communication, particularly with regards to Advanced Care Planning, we aim to improve quality-of-life at the end-of-life and reduce futile care measures and caregiver burden.
Kerrie Wiley is a social researcher with the National Centre for Immunisation Research and Surveillance and the University of Sydney. Kerrie’s research interests are in the social and behavioural aspects of vaccination, and their implications for policy and practice.
Her current research is exploring pregnant women’s attitudes to influenza and pertussis immunisation, from which decision aids are being developed to facilitate decision-making regarding immunisation during pregnancy.
Hal Willaby is working at the National Centre for Immunisation Research and Surveillance (NCIRS) in the social research unit, seeking to understand - and design interventions to overcome - the psychosocial barriers to voluntary vaccine uptake. As part of the work at the NCIRS, the team considers the relationship and conversations between health practitioners and patients/parents to be a critical intervention point. Hal’s team at NCIRS take the view that parents' hesitations about vaccines should be heard and not judged by HCPs, but at the same time they want HCPs to feel empowered to influence parents toward vaccination so that Australia experiences higher vaccine uptake. The team considers the decision to vaccinate as mostly a foregone conclusion (though there are some exceptions) Thus they aren't using SDM to help patients decide between two equally valid alternatives. Rather, Hal sees the team using the principles of SDM to help parents explore various aspects of the decision so that they eventually come into line with recommended guidelines.