Professor Diana Greenfield, Consultant Nurse at Sheffield Teaching Hospital NHS Foundation Trust was part of the Steering Group that advised on the two-year JLA Priority Setting Partnership to identify the top LWBC research priorities. Here she explains why identifying the top 10 research priorities for living with and beyond cancer is so important.
The success of modern oncological treatment speaks for itself through survival statistics. If we look at the latest 5 and 10-year survival rates by cancer type, by gender and by age, the progress made over the last few decades is huge, and ever improving. Now look at those statistics again and ask: are those individuals represented in survival statistics living well? Are they recovered? Is it enough to be disease-free or disease-stable? And the answer is, we can’t tell. But very many people living with cancer have testimonials which say otherwise. And those of us in clinical practice are aware that there are very many people living with and beyond cancer who may not be living well. Many have a legacy of functional, physiological, psychological and social effects, or the risk of developing these problems further down the line. Some of these treatment consequences are treatable, manageable and tolerable. Others, life-changing or even life-threatening. The survival statistics are impressive, but they don’t provide the complete picture.
Treatment consequences can depend on a multitude of complex factors, from age, gender, diagnosis and disease extent, treatment type and intensity, co-existing health problems, social and family support, mental health, employment status and so on and so forth. Further, the range of treatment consequences is broad and includes physical, emotional and social effects. This variability represents a challenge to existing health and social care services and the way care is organised. This is another reason why we need research into this new field of living with and beyond cancer. We owe it to our growing epidemic of people living with or beyond cancer.
Apart from asking patients themselves, involving health care professionals from a variety of professions such as nursing, medicine, physiotherapy, radiography and primary care in the research priority setting exercise is invaluable. Collectively health care professionals have a wealth of clinical experience and have assimilated multiple observations and anecdotes. The combination of frontline professionals working with people living with and beyond cancer and with patient charities is a powerful one. It provides a 360 view of the issues.
Working with the NCRI
When Feng Li, the NCRI Programme Manager invited me to take part in the Living With and Beyond Cancer James Lind Alliance Priority Setting Partnership, I jumped at the opportunity. As a clinical academic nurse leading the late effects service at Sheffield Teaching Hospitals, I spend my working life supporting people affected by cancer and know how important it is to have front line health care professionals equipped with the skills and resources to provide the best care possible.
I was one of two senior nurses on the steering group and it was a positive and interesting experience. The hardest task of the project was reducing the several thousand questions submitted into themes and eliminating “out of scope” questions. The most fulfilling part for me was participating in the final session where very many patient and carers distilled the research questions down to the top 10 priorities. It was a privilege to have been involved and to have worked with so many people affected by cancer from all over the UK and with so many stories themselves. I am grateful to the NCRI for involving a range of health care professionals, including nurses, in this process. Including experienced nurses in these exercises enhances the collective perspective.
When I started research in late effects as a post-doctoral research fellow 17 years ago, there were extremely limited funding opportunities to apply for. This situation will improve with more dedicated funding to translate the top living with and beyond cancer priorities into research programmes. Implementing evidence into clinical practice and changing the culture of care so patients report improved experiences and fewer treatment consequences will be the next. It is a long game.
Developing these research priorities has been a huge undertaking and already represents a shift in culture. When I become Minister for Health, I will ensure that research generation and implementation will be at the core of health delivery and at the top of hospital managers and cancer commissioners’ agenda!
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