Cancer patients want scientists to study the practical, social and emotional issues surrounding cancer - including how to live with cancer - says a ground breaking new study. These views differ from the interests often expressed by the scientific community.
Published in the British Journal of Cancer today, the Macmillan Listening Study is the first UK wide study to ask cancer patients to identify areas of research they see as a priority. Furthermore, people affected by cancer became involved in the study and trained as co-researchers to help develop the study, run consultation groups and analyse the results.
The study identified fifteen priority areas with the top research theme being ‘the impact cancer has on life, how to live with cancer and related issues’. This included topics such as;
- What are the psychological consequences of cancer?
- Is there evidence that a positive attitude helps?
- Do support groups help?
- What are the lifestyles of longer cancer survivors?
Professor Jessica Corner, Director for Improving Cancer Services at Macmillan Cancer Support, and Professor in Cancer and Palliative Care at the University of Southampton, who conducted the study, said, “This is the first-ever study to consult people affected by cancer on their beliefs about cancer research and involve them from the outset. It’s apparent patients have clear views on where they believe research funding should be spent but these views reflect a different perspective from the research generated through the expert scientific community.
“Equally worrying is that these priority areas are currently under-represented in UK cancer research - more research needs to be done to address these issues.”
Other priority areas identified in the study included; risk factors and the causes of cancer such as genetics, stress, diet and the environment; and early detection and cancer prevention. Although biological and treatment related aspects of research were identified as important, patients rated practical, social and emotional issues as a higher priority.
Jenny Walton, a cancer patient who took part in the study, says, “The Macmillan Listening Study is so important – it will open the eyes of public to cancer research and should influence what research gets done. The study has been an excellent opportunity for cancer patients to put forward their own ideas about what should be researched rather than having the research agenda set by clinicians alone.”
“I found the experience of being a co-researcher satisfying because, like many cancer patients who are on the road to recovery, I want to give something back. This study allowed me to ‘do my bit’ for research.”
The Macmillan Listening Study was funded by Macmillan Cancer Support, the UK’s leading cancer care charity, and sought views from 105 cancer patients across the UK of different ages and backgrounds. The Macmillan Research Unit at the University of Southampton led the study in partnership with cancer patients and carers.
Professor Jessica Corner adds, “Our study proves that cancer research is not too complex a matter for non-scientists to consider and, in fact, people were able to actively discuss a range of issues relating to science, medicine, health, social care and the value of cancer research. It is also interesting to note that people’s beliefs in what the research agenda for cancer should be, is not necessarily influenced by patients’ immediate experiences.
“It is clear there is a mismatch between research priorities identified by people affected by cancer and those of the current research community. The research areas identified in this study need development and, as research bodies depend increasingly on how well they reflect the underlying values of the public, it is now over to the scientific research community to respond positively to these suggestions.”