I would like to thank Dr Emma Crosbie and Daloni Carlisle for writing this incredibly informative blog and I am delighted to be able to feature it in Gynaecological Cancer Awareness Month.
Just over two years ago, the Womb Cancer Alliance set out to find the top ten research priorities in womb cancer. This month they were published in the esteemed Gynaecologic Oncology Journal. We couldn’t be more proud – or more excited. It’s been a long road but that’s because this was a truly consultative exercise where clinicians, researchers and lay people worked hand in hand to identify and prioritise the questions that matter to all of us, collectively. Over 400 people took part generating 247 research questions. Deciding the top ten from such a long list was no easy task.
Our starting point was the twin scandals of the increasing incidence of womb cancer – 25% up on a decade ago in the UK and rising – coupled with low investment in research. In 2012 just 0.7% of the UK’s total cancer research budget- a paltry £3.3m – went on womb cancer despite it being the fourth most common cancer in women and the most common gynae cancer. Womb cancer research here in the UK and in the US receives less than one fifth of the research funds allocated to ovarian cancer.
We set out to find out the research priorities that need funding the most both to ensure what little money is allocated to womb cancer is well spent and to start to make the case for a bigger share of the pie. We had funding from the National Institute for Health Research (NIHR) and used the James Lind Alliance Priority Setting Partnership approach. We wanted this to be more than an academic exercise; we wanted to influence the research programme of the future.
You can read the whole methodology here in the published paper but in brief, we started with a questionnaire that asked professionals and lay people for their top research questions. We reviewed these and grouped them by theme, eliminating any to which there was already an answer. Next we held a workshop to reach a long list, on which we consulted by survey to identify those regarded as most important by our stakeholders. The final stage was a workshop where groups of professionals and lay people ranked these top priorities to find our final list of ten.
There were plenty of safeguards along the way to prevent bias creeping in and to make sure the whole process was transparent and open. We are confident that we truly have identified the things that matter to everyone with an interest in womb cancer research. The top ten questions span disease risk stratification, diagnosis, treatment, management and survivorship that cover the breadth of patient experience of this disease. They are:
- Is it possible to develop a personalised score which reflects a woman’s individual risk of developing womb cancer?
- Which women with abnormal vaginal bleeding should be referred for specialist review?
- What are the most effective treatments currently available for advanced womb cancer and what key molecular pathways should be targeted when developing new treatments?
- Can we predict which women will benefit from adjuvant chemotherapy or radiotherapy and avoid ineffective treatments?
- Are blood tests, including markers like CA125, useful in predicting duration of survivorship and/or recurrent disease?
- What ways of raising public awareness about womb cancer are the most effective?
- What are the psychosocial issues surrounding the diagnosis and treatment of womb cancer and what interventions might be helpful?
- What are the underlying causes of the different types of womb cancer and how do they develop?
- Can we predict at the time of diagnosis which womb cancers and pre-cancerous lesions will respond to hormone treatment?
- Do changes in lifestyle, including weight loss, reduce the risk of recurrence and improve survival in women who have been treated for womb cancer?
So what next? Sharing these priorities is important, obviously, but so too is securing funding. We believe that identifying these questions is the first step to accelerating research that will maximise health benefits to women, both those at risk of developing womb cancer and those who have already been diagnosed with the disease. The Womb Cancer Alliance has already received a “highly commended” in the National Institute for Health Research’s new media awards for our patient and lay person involvement – you can see a video here. We hear on the grapevine that our research priorities are now influencing discussions at the NIHR.
Beyond this, the Womb Cancer Alliance has forged some longer lasting partnerships between professionals and lay people and between different groups with an interest in womb cancer. Together, we can and we will make a difference to womb cancer research.
- Dr Crosbie is NIHR Clinician Scientist, Senior Lecturer and Honorary Consultant in Gynaecological Oncology at the Division of Molecular and Clinical Cancer Sciences, University of Manchester
- Daloni Carlisle is a lay member of the Womb Cancer Alliance steering group and is living with recurrent womb cancer.
This example highlights very clearly what can be achieved with a culture of collaboration and open thinking. I would like to hope that everyone reading this will think about how they work within the cancer sector. Only just this week I have had many conversations with senior people telling me how poor collaboration is in key areas. I know this to be the case from my own experiences. Much innovation from individuals is being ignored by large organisations. Only by working together, big and small, will we truly make progress against cancer.
As always please feel free to share your thoughts and opinions below.