Clinical Trials

Under-researched topics/priorities for other research

People we talked to were asked if there were any areas that they thought needed more research or needed to be given greater priority. A few people said they could not think of anything in particular or did not know enough to comment. However, others came up with a wide range of suggestions, both about specific conditions or groups of people, and also about types of treatment and types of research. Not surprisingly, people most readily identified conditions which they themselves had experienced as needing more research.
 
However, a common theme was the need for more research into neglected conditions, which do not attract much public support. For example, Fenella wanted to see more research into mental health problems, and Caroline took the view that the research agenda is skewed by both drug company funding and the interests of more powerful charities, which she felt led to some research areas being neglected.
Another common theme was the effects of complementary and alternative therapies, both amongst people who favoured such therapies and those who were more sceptical.
Several people commented on the need for research into less easily measurable aspects of health and health care.
Trials in surgery have become more common, but when Jayne was diagnosed with breast cancer some years ago, the surgeon she saw was dismissive of her wish to be in a trial. She said, “He probably didn’t know much about them, because he was what I would class as an old-school surgeon, and surgeons don’t do clinical trials because surgeons know best.”
Several people with cancer hoped that there could be more research into ways of minimising the side effects of current treatment methods. For example, Gill was interested in new research she had heard about into “better targeting of the chemicals, rather than just blitzing everything, because chemotherapy wipes out a lot of good cells as well as bad cells.” Julian had a similar view, and had high hopes for genetics and DNA research.
As well as the effects of different kinds of treatment, some people wanted to see more investigation of the causes of conditions, and factors which might affect them such as lifestyle or ageing. Jenny, for example, wanted to know more about what caused the uterine fibroids which led to her heavy periods. Angela was interested in more scientific research into causes of Parkinson’s, while Phil wanted to know more about the relationship between sport and high blood pressure.
Several people emphasised the role patients or the public can play in informing research and research priorities. (See also ‘Public awareness and involvement’).
Joanna agreed that lay involvement was important, and has become one of two consumer representatives on the board of the National Cancer Research Institute. However, she suggested that the impact of lay involvement is itself something that needs researching.

Last reviewed July 2015.
Last updated June 2013

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