Research Australia - Dr Janine Porter-Steele
What is the Emerald Study and what research was utilized or implemented through this project?
A team of leading Australian and New Zealand researchers are undertaking a study called The EMERALD Study (Younger Women’s Wellness after Cancer Program). The Emerald Study is a feasibility study that will examine the potential for delivery of a lifestyle intervention addressing wellness and health in younger women after treatment for cancer.
Younger women (<50 years) treated for cancer are a large and growing population approximately 3,973 were diagnosed with breast cancer in 2021 representing 20% of all breast cancers diagnosed that year. Whilst the survival rate has increased, women who are premenopausal at the time of breast cancer diagnosis can experience a range of detrimental treatment outcomes
These outcomes can be many and varied and include fear of recurrence, increased stress and anxiety, sleep issues, early menopause, obesity, body image concerns and sexual dysfunction, and frequently disruption of family and work roles. There is also a risk of other chronic health issues such as heart disease and type 2 diabetes as well as other cancers.
Once treatment is completed and regular visits to their treating teams reduce in frequency, women often find themselves without the information and support to manage these issues.
The Younger Women’s Wellness after Cancer Program aims to improve quality of life and reduce treatment-related chronic disease risks in this group of women by offering a 12-week lifestyle intervention focusing on the concerns above. Supported By an experienced cancer care nurse delivering virtual consultations throughout the 12 weeks the women also have access to a comprehensive and holistically focused journal as well as a web site to help them develop goals around increasing exercise and developing healthy dietary habits as well as reduction of the long term and late side effects discussed.
There are currently few holistic interventions aimed at helping young women overcome these late effects and ongoing chronic health risks and it is anticipated that this program can help address this gap whilst developing a bridge between hospitals and GPs. Often the hospital healthcare stops once the disease is under control and there is a gap for patients from this point onwards. Patients often talk about “who’s watching me now? ” and “I’ve had a prescription for everything else during treatment but not a prescription to help me manage side effects and my future health?”. Transitioning from intense hospital oncology treatment back to primary healthcare where GP’s will be able to refer those with specific identified needs onwards to allied health specialists to continue to reduce the risk of chronic health and side effect concerns
Funded feasibility trials of cultural- and language-adapted versions of EMERALD have recently been completed in New Zealand and Hong Kong. The aim of the Emerald study is to test the feasibility of the Australian version of The Younger Women’s Wellness Program in a similarly aged, representative sample of women from around Australia prior to a multi-site trial of EMERALD in Australia, New Zealand, and Hong Kong. Potential outcomes include confirmation that a multi-site study is feasible and effective in the Australian cancer context, and reduction of treatment-related chronic disease risk in study participants
This study is being conducted through Wesley Research Institute in collaboration with University of Queensland, University of Technology Sydney, University of Auckland, and other health organizations including The Wesley Hospital Choices Cancer Support Centre.
How did you get involved in research?
I am in a unique position because when I was studying my PhD, I was lucky enough to work with a great university team looking at and developing programs to support women’s health. In particular, these have been led by Professor Debra Anderson from University Technology of Sydney and Professor Sandie McCarthy from University of Queensland who have also been great mentors for me. This team has now extended with global connections and an incredible expansion of the Wellness Programs, covering many elements of health.
I gained a greater understanding about conducting safe, appropriate research trials, and managing data. Through this collaboration, I co-wrote the materials for this and other interventions, as well as developing the health professional training for delivery of the interventions.
My experience with working at the Wesley Choices Cancer Support Centre (Choices) enabled me to help incorporate supportive care and side effect management into those programs and specifically a midlife Women’s Wellness after Cancer Program. Having an understanding of the significant issues women go through during and after treatment from a clinical perspective was helpful to the bigger team and also blended into my PhD research aim, which was about the effect of the Women’s Wellness after Cancer Program intervention on women’s sexual health, intimacy and body image. Similarly at The Wesley Hospital, I have been extremely fortunate to be supported by senior leaders to integrate research we are involved with into the Choices programs enabling us to provide the best and most relevant evidence-based care we can for our patients.
Because people have been willing to support and mentor me, my research endeavors have been fulfilling and constructive. When I started my career as a nurse, I didn’t imagine I would be so involved in research. This has reaffirmed my belief that nurses, and other allied health professionals are in a unique position to make an incredible difference to the day-to-day care patients in all realms of care. In the cancer space there are many long-term side effects causing numerous chronic health issues including diabetes, obesity, and heart problems. Nurses, dietitians, exercise physiologists and other health practitioners are undertaking research that will potentially help improve quality of life for patients and reduce and help develop solutions to these side effects.
How do we encourage the nurses and allied health professionals to put their hand up with their research ideas?
The majority of research originates from scientists and medical doctors so they may not readily think of research coming from their medical specialty. If people have not previously been involved in research, then they may doubt they have the skills to conduct research. We need to run education programs in hospitals to actively encourage research being conducted by nurses and allied health professionals. We also need to provide mentoring support to novice researchers to help keep them on track and engaged and enjoying the process. It is important to encourage the clinical and academic collaborations because working together is what will make a difference to our patients, and they should be our main focus.
What role do clinically based researchers play in embedding research into health systems?
Nurse and allied health researchers are engaged in multiple roles. One way this can be done is being open to new research ideas and appraising the quality of the evidence to embed the research into practice. Another is identifying where there may be knowledge gaps in practice and formulating questions to address these gaps. Importantly, seeking support from their organization and collaborating with others who may also be actively involved in the patient’s care is highly significant. This should not just be within the hospital or community setting but also in partnership with university experts and very importantly, in collaboration with advocates with a lived experience, who provide a significant dimension to patient focused research. It should be a responsibility of those within the hospital, research, and community setting already engaged in research translation, to educate and mentor others by actively supporting and demonstrating how to integrate evidence-based, cost-effective research into practice.
Research isn’t always about producing new ideas, it is sometimes about replicating and evaluating others’ research to see if the same outcomes can be achieved or if further developments can be made to better fit the targeted patient outcomes.
It is also about ensuring changes from research are cost effective as well as generating good outcomes, so they can be embedded into practice effectively.
What are the barriers to getting involved and conducting with more research?
It is a complex issue and speaking from a nurse’s perspective I do believe nurses and allied health practitioners are concerned about the research process, how to conduct research, understanding quantitative or qualitative data, managing statistics, writing research questions and so on. Unfortunately, this may seem disconnected to the clinical work in practice and therefore difficult to do. However, there are great courses within the Universities that teach all these elements. Working as a research assistant on a clinical trial is another way of learning and understanding these tools and the research process.
There is also the big issue of getting funding to undertake research. Most often grants must be applied for and there is definitely a skill to writing grants. This is a re extremely competitive process which makes it even more important to collaborate effectively with teams who are expert in the area you might want to examine, improve, or change. We have been extremely fortunate to receive two recent grants through Wesley Medical Research. Many hospital research institutes offer grants for nursing and allied health focused research, but again the secret to getting these grants is working collaboratively and keeping your own ego out of the equation!
A common barrier for all researchers is how to fit it into their already busy work schedules and this is no different for nurses and allied health professionals considering being involved in research. There needs to be a way to integrate the two and embed research within daily work schedules and therefore encourage broader research initiatives.
Integrating research and clinical practice brings many benefits for all involved not only where it is being undertaken, but also nationally and internationally. It y positively increases the hospital’s reputation, provides the professional satisfaction that comes with improving patient care, and ultimately it enhances outcomes for patients.
What is the importance of consumers in research?
Consumers in research includes people with the lived experience who may be newly diagnosed as well as those who have some time since their diagnosis and are now involved in a unique way, providing the patient voice to research, policy and clinical practice initiatives. Without good consumers, you do not have good research. Expert consumers are important for research being conducted in health services because they bring a wealth and diversity of knowledge and understand the realities of treatments and psychosocial issue. However, to do this well, it is important to make sure you have the right consumers in the role and utilizing people who are well trained will help achieve this. Consumers involved in research should be involved every step of the way in the research process. They can look at information protocols, develop lay summaries, so people understand what the research goals and results are and assess the burden on the patient. They also provide a barometer around the value of the research, for example if the research is deemed too onerous or they can help assess if it is appropriate. If they have constructive feedback, it is a positive, as it makes you re-think the research and refine your objectives. Consumer voices need to be loud, present and champions of research being undertaken because their lived experience provides an important dimension.
Focus groups are another way to include the patient voice and access insightful feedback. Again, those with a lived experience can articulate what may be missing in their patient care and suggest ways forward to improve this. Focus groups have been integral to the studies I have been involved in and have been poignant and telling around experiences and how we as health professionals can improve care.
How to improve the connection between academic institutions and hospitals?
Due to different focuses, there can be a disconnect between academic institutions and hospital organisations. Enhancing collaboration by encouraging hospitals to focus on research education initiatives will help bridge the gaps. This will be particularly relevant in increasing capacity to develop clinical research translation.
Clinical research is a team effort, and not one person. A good team will bring balance and diversity and will include those with the lived experience, clinicians, academics, and hospital leaders. It is a combination of ideas, collaboration, good relationships, and networking.
What’s the positive impact of more nurses and allied health professionals conducting research?
Nurses bring their own unique perspective to research. A lot of their expertise focuses on the whole person, in the management of numerous illnesses and conditions, managing wound care, preventative work, delivering positive lifestyle interventions, improving patient comfort. In fact, there are so many aspects of patient care that potentially would evolve through their inclusion and engagement.
So much can be accomplished in improving the quality of life of patients, their families, and carers by incorporating a collaborative approach to research. Working as a team and beginning with prevention and across the treatment trajectory and beyond, positive results will be evident in research institutions, hospital organizations, and into community.