​Please describe your education and training.
I am weeks away from submitting my PhD at the University of Sydney. My PhD focused on methodological issues with patient-reported outcomes (PROs) in clinical trials, such as missing data and incomplete reporting. This work grew out of my experience working at the Quality of Life Office and assisting members of the cancer clinical trials groups to develop and analyse PRO endpoints in cancer trials. Missing data is a vexing and all too common issue. In many cases logistic oversights and administrative errors can lead to patients not completing questionnaires as scheduled, however in cancer trials, missing data is particularly common from patients who are not doing well on treatment. Therefore analysing only the available PRO data can lead to an overly optimistic picture of patient outcomes. There are statistical methods for addressing missing data, however these need to be interpreted and reported carefully within the clinical context.

Since 2013 I’ve been involved in the International Society for Quality of Life Research (ISOQOL) Best Practices for PROs Taskforce, which is developing PRO-specific guidance for trial protocols (a SPIRIT-PRO Extension: Standard Protocol Items for Randomised Trials). I have learnt so much about PRO and clinical trials methodology from this collaboration with a team of truly inspirational researchers.

I also have an honours degree in perceptual psychology; my thesis examined how certain qualities of odours (familiarity, pleasantness) interfere with our ability to name and objectively describe them. After completing my undergraduate degree I worked as a Assessor for the Making Up for Lost Time In LITeracy program at Macquarie University where I was lucky enough to work with children involved in the program from a small Indigenous Community in far North Queensland.

What is your current role?
I am looking after the Health Behaviours research program at the Behavioural Sciences Unit whilst Dr Joanna Fardell is on maternity leave (I have big shoes to fill!). There are two main projects in this program. The first is a study looking at paediatric cancer survivors’ engagement in long-term follow-up (LTFU) care, as well as their health behaviours, unmet needs, preferences for care, quality of life, and a range of other variables. The second study is a pilot test of an intervention to assist survivors of childhood cancer to “Re-engage” in LTFU care.

What are the ‘best’ parts of your current role?
I’m looking forward to working on analyses of possible associations between clinical/demographic factors and engagement in sun-protection behaviours. I’m also really interested in learning more about the complicated and diverse set of issues that long-term childhood cancer survivors are faced with. The best part of my current role would be knowing that this research is working towards improving the outcomes, quality of care and quality of life of these individuals who have already been through so much.

What are the most challenging parts of your current role?
I will only be working one day per week initially, which may be a challenge as there is a lot to learn. The Health Behaviours team have been absolutely fantastic in getting me acquainted with history of both studies and the large LTFU dataset.

Where do you see yourself in five years’ time?
I have worked in health research for a few years now and my enthusiasm for the field continues to grow, so I expect I will still be working in research in five years’ time. Whatever my focus, I hope it is patient-centred and clinically meaningful.

What advice would you have for someone wanting to follow a similar path in terms of their study/career?
1. Be prepared for a lot of acronyms!
2. Find a team that inspires you and shares your values and enthusiasm to improve patient outcomes.
3. Be open to new experiences, opportunities to learn and to work through research challenges.







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​The Behavioural Sciences Unit is Proudly Supported by the Kids with Cancer Foundation.

Please describe your education and training.
I studied a Bachelor of Arts at the University of Sydney with majors in history and psychology. I have also just recently completed a Masters in Global Health at the Karolinska Institutet in Stockholm. It was a great opportunity to meet students from all different places and from a variety of different disciplines. As part of the course we also conducted our own independent research project. Mine examined maternal health care and caesarean sections in Gujarat, India. 

My first research role was on a project investigating the perceived health impacts of windfarms in Australia. People in a small community in Victoria were worried that the sounds waves created by the turbines (inaudible to humans) were causing health effects such as headaches, interruptions to sleep and bleeding noses. There appeared to be no scientific evidence supporting this link. It was discovered that these views resulted from misinformation spread by anti-wind farm lobby groups. I found this project interesting as it showed how easily perceptions around health risks can be formed and altered with little to no scientific evidence.
I was also lucky enough to have an internship at the International Agency for Research on Cancer (IARC). It was a great opportunity to be a ‘fly on the wall’ and observe how research is compiled, discussed and published.

I have also worked as a research assistant at the Centre for Medical Psychology & Evidence-based Decision-making (CeMPED). I was primarily assisting a PhD student with her study on lung cancer and diagnosis pathways. This exposed me to the patient side of research and gave me the opportunity to interview patients regarding their diagnosis and hear individual stories. This was my first role where I could see the immediate positive effect of research on patients and how it could potentially assist those who were diagnosed with lung cancer in the future. 

What is your current role?
I am currently working as a research officer with the Behavioural Sciences Unit on various projects.  In one project I am working with a PhD student who has designed a decision aid to assist parents and young adults in making decisions around clinical trials. She has also created a website to provide information and tasks to help make this process easier for parents and their children with cancer.

I also look forward to working on the ‘PRecISion Medicine for Children with Cancer – PRISM’ project which aims to offer explorative therapies, based on new genetic technologies, to paediatric cancer patients who have a poor prognosis. We will also be exploring the psychosocial impact of this process, including families’ hopes and expectations of genetic technologies.  

What are the ‘best’ parts of your current role?
Having just started at the BSU I have been overwhelmed by the friendliness of the staff and feel very welcomed. I like that my role here is very diverse and I often do different types of tasks in one day. For example, I have spent the last few weeks assisting with improving the decision aid website. To improve access and test the functionality of the website we have been using eye-tracking technology. This will potentially enable us to determine which areas of the website need development.

What are the most challenging parts of your current role?
I foresee some challenges in talking with patients and their families about very difficult life experiences, and balancing their emotional needs with the aims of the research. As patients and participants can often be in quite vulnerable states I think it is important to remember that their needs should come before the needs of research.

On the technical side I’ve always been more proficient with qualitative research than quantitative (despite my best efforts). However I’m always keen to learn new skills.

Where do you see yourself in five years’ time?
I have always liked research and areas related to behavioural change.  At the moment I find the area around perceived risk and knowledge about health very interesting. I think that scientific literacy is very important to debunk health myths and to improve the health of individuals and the public.

I am also interested to see how advances in genetic testing and personalised medicine will change healthcare. I think that it would be interesting to study how to best inform the public about such technical topics and foster discussion regarding the use of genetic technologies.

What advice would you have for someone wanting to follow a similar path in terms of their study/career?
My advice to anyone looking for work in this area is to get as much experience as you can. Working with patients facing very difficult life challenges can be emotionally challenging at times, but nevertheless reminds you of the value of the work you are doing.  It is so rewarding to meet the people you aim to help and see how research can have practical positive outcomes. If you are still looking for your research ‘niche’, stay persistent and patient (you will find something!)