Best Health Services and Policy Research Papers – 2018 Award winner

I was thrilled to be awarded the Overall winner of the 2018 HSRAANZ Best Health Services and Policy Research Paper last night. These awards recognise the best scientific works in the field health services and policy research. The award was for my paper on cancer-related lost productivity in the developing countries Brazil, Russia, India, China and South Africa (see my blog post for more details).

The article impressed the judges in the scope of research undertaken and the value it will contribute to the research field, including its potential to guide local prevention and treatment strategies. (HSRAANZ)

For the paper I was responsible for leading a large, international team of researchers to conduct an analysis of productivity loss due to cancer in rapidly developing countries. I had a leading role in the conceptualisation of both the research question and the project methodology, and applied for and received funding through an EU CANWON fellowship to undertake the project. I gathered the necessary data with assistance from the international authors, and was solely responsible for the formal data analysis. As the lead author, I was also responsible for the project administration and preparation of the manuscript.

Following publication of the paper, I lead the promotion of the publication through various media channels, including The Conversation (~6,000 readers) and 44 radio, print and tv news articles (including The Guardian, Lancet Oncology News, UN News, 2SER ThinkHealth podcast, etc.) As a result, the article has gone on to be in the top 5% of all research outputs scored by Altmetrics, and the number 1 article of similar age published in Cancer Epidemiology. More importantly, I have worked with each of the international authors to ensure that the results have been disseminated to the appropriate policy and health service planning agencies and individuals in each of the BRICS countries. This has included developing country-specific specific results and graphs, assisting with presentation slides and encouraging broad dissemination lead by the other authors.

The above two paragraphs are a summary of the application I submitted to HSRAANZ for the award, and while it is true it skips the importance of this paper as part of my professional development. I was so lucky to be supported by Linda Sharp, Isabelle Soerjomataram and Paul Hanly to lead the research, and to apply for and take up funding to visit IARC and get the project started. The team we pulled together were really engaged with the project, and instrumental in pulling together and then interpreting the local and international data. I now count them as ongoing collaborators, and we already have a few papers and grant applications in the works.

But perhaps the most important lesson from this paper was resilience. I was so proud of this work once it was finished, but it took more than 12 months, an international relocation and 7 journal rejections before it was published. During that year I learnt perseverance and the value of a few days ‘cooling off’ before commencing the reformatting process, as well as how wonderful it is to have co-authors who will keep the faith in the manuscript alive when you (temporarily) run out! So thank you to everyone who helped out on the paper in whatever way – from digging out local data to offering supportive glasses of wine after another rejection! It was all worth it.

Cancer is about more than health: work and leisure after cancer

This is a guest blogpost by Marjon Faaij, who I was delighted to supervise for her Master of Pharmacy research project.  We made a great team – Marjon had a personal interest in the impact of cancer on daily life, and I had access to some data about cancer survivorship through the PROFILES registry. Even better, because Marjon was from Utrech University, she could translate the Dutch PROFILES data much more easily than I could! Marjon presented the results of her research at the NCRI conference in the UK, and we are now writing them up as a publication. In the meantime, Marjon put together this summary, and was kind enough to let me share it here.

In 2005, I lost my mother due to cancer. Before she died, she was sick for almost three years. During this period, cancer had a big impact on her daily life. Shortly after the diagnosis of cancer she could still do everything she liked; working in the hospital as a nurse, taking care of her family, cleaning our house, giving music lessons and swim lessons and socialising with friends and family. But as the time after the diagnosis increased, she became sicker, she had more pain and was more tired. She did not have the energy to do all the things she liked. She decided to work less hours until she stopped working completely. She used this time to spend more time with us and to rest more.

A lot of different factors influenced her decisions about doing work, unpaid work and leisure. One of the most important factors for her was the support from family and friends, but I can imagine that it will be different for each cancer patient.

Therefore, I decided to do a research project about the different factors of influence on cancer survivors doing daily activities, for my Master of Pharmacy. For this research I used surveys of Dutch cancer survivors, including people with Hodgkin lymphoma, non-Hodgkin’s lymphoma, multiple myeloma, thyroid or prostate cancer.

Factors of influence

From my results it is clear that cancer survivors are less likely to do paid work, and those who do work are likely to work fewer hours. Cancer survivors are also more limited in their unpaid work and leisure. However, how much cancer influences each activity is dependent on cancer type. Each cancer type has different symptoms, and has different treatments, which leads to different influence on doing daily activities.

Consistent to my mother, most cancer survivors try to keep working and fully participate in leisure and unpaid work activities. However, if they become sicker it is harder to fully participate in these activities. When they are limited in one area, they appear to be limited in all activities.

There are a lot of factors that have influence on doing daily activities. For example:

–         People were less likely to have a paid job if they were: female, had surgery, older, widowed or had multiple comorbidities.

–         People were more likely to be limited in their unpaid work if they had: non-Hodgkin lymphoma or multiple myeloma, multiple comorbidities, were female, or were never married.

–         People were more limited in their leisure activities if they had: medium education or multiple comorbidities.

It was interesting that people who received more follow-up services were no more or less likely to report difficulty with paid work, unpaid work or leisure. But people who felt satisfied with the follow-up care they received had an increased chance of participating in daily activities.

What does this mean?

These results show that there are many factors of influence on daily activities. The factors are unique for each cancer survivor, and so are the impacts. It is important for patients to know that changes can take place across all of their daily activities during cancer, so they can prepare for and react to these changes.

Doctors need to know that cancer and its treatment can influence patients’ daily activities, and that these changes can be important for quality of life. Discussing these changes with patients and providing support and referral to services that can assist patients (and their families) during this difficult time. These referrals are not possible if there is nowhere to refer patients to, and so health care systems need to ensure that services like work rehabilitation, occupational therapy and palliative care are available and appropriately funded.

Finally, the results are important for health economics. Economic evaluation using a societal perspective account for  changes in paid work due to illness (known as lost productivity) but the contribution of unpaid work usually goes unaccounted for. From these results it is clear that cancer has a big impact on both paid and unpaid work, and thus both should be considered in economic evaluations taking a societal perspective.

This research, cancer is about more than health – work and leisure after cancer, is based on data of the PROFILES Registry. This research project is carried out by Marjon Faaij. She is a Dutch Master of Pharmacy student from Utrecht University. This research project has been done at the Centre for Health Economics Research and Evaluation at the University of Technology Sydney, under the supervision of Alison Pearce and in collaboration with Dounya Schoormans of the PROFILES Registry.