Clinical research (clinical trials and translational research) is fundamental for improving understanding and treatment of diseases, and it is incumbent upon researchers to recruit patients to take part in these studies. In 2000, the NHS Cancer Plan set out to improve accrual to clinical trials in England. This drive led to almost 11% of newly diagnosed cancer patients taking part in a clinical trial in 2004, but more needs to be done to attract patients into studies, to result in more rapid improvements in cancer care.
The reasons for not taking part in clinical research are complex and include poor public awareness of the importance of clinical research and fear of the process and consequences of taking part.
According to a recent survey of 1900 cancer patients at Wisconsin University in the USA, up to 60% of patients are not told about clinical research by their treating team. In the UK, the Department of Health established the NCRI Consumer Liaison Group in 2001 to reach out to the public, raise awareness of clinical cancer research and promote consumer involvement in the design of studies. This organisation advertises mostly to individuals wanting to become more involved in research, inviting them to attend educational courses. They have very few outreach activities aimed at the uninterested ‘man in the street’. Similarly, UK charities such as Cancer Research UK and Macmillan have excellent resources (websites, booklets and informed staff) to educate on all aspects of clinical research, but these are usually only accessed by pro-active individuals on a need to know basis.
Thus, current research-promoting strategies are for the most part only reaching people who are already interested in clinical research and want to know more.
Most media coverage of clinical trials is negative and there is a general misperception that clinical research is harmful to individuals taking part. Take for example the Northwick Park trial in 2006. Six health volunteers suffered life threatening multi-organ failure after receiving a new anti-inflammatory drug being tested in a private early phase clinical trial. After this event, the MHRA introduced even tighter trial regulation to prevent similar occurrences. News coverage failed to point out the very rare nature of life threatening complications in clinical trials and the media makes no attempt to report the overwhelming majority of studies that benefit patients. It is therefore not surprising that this unbalanced representation leads to ill-founded fears about clinical research.
Cancer patients who are averse to clinical research for whatever reason are unlikely to access Cancer Research UK, Macmillan or similar websites and, as discussed earlier, the majority will not hear about research options from doctors/nurses when they become ill. Consequently, unless these patients are referred to a research-active centre, they will be denied the opportunity of taking part in a clinical research study. They may therefore be able to access potentially beneficial new treatments and their clinical course will not help to develop new/better treatment for future patients.
On the other hand, people who understand the value and purpose of clinical research are more likely to enquire about trial options if treatment is proposed and more willing to participate in clinical research to help themselves and others. This in turn leads to faster completion of studies and improvements in health care.