Education and raising public awareness of trials

Clinical trials involve testing medical interventions on members of the public, function at a societal level and aim to help determine health care policy for the entire community. Yet, the level of public understanding and awareness of trials is poor. The need for clinical trials to establish the value of new and existing therapies is not widely appreciated. Many people believe that trials are offered only as a last resort when other options have failed [46] and a substantial proportion think that doctors know privately which of the treatments on offer in a trial is best [47]. There is therefore an urgent need to raise public awareness about trials - what they are, how they work and why they are important. There is a need to educate the public that 'new' does not necessarily mean better and that there is the very real possibility that new treatments may be less effective or more toxic than standard care. Similarly, we need to reassure those patients who fear that trials always compare an active treatment with a placebo or no treatment [48] that in cancer trials this is seldom the case. It is important to convey the fact that most randomized trials in cancer compare new treatments with the best standard therapy.

Entry to trials would be less stressful and upsetting if patients had a good understanding of trials and awareness of the issues involved before they were invited to participate in a specific trial. This is especially difficult for cancer and other life threatening illnesses because trials are discussed at a particularly difficult time, when there are many other important decisions to be made. Perhaps it would be easier if we each had an idea of whether in principle we would be willing to take part in a trial, should the opportunity arise. It has been suggested that members of the public should carry a 'trials participation card' in the same way that they would an organ donor card [49].

Although open and informed public debate concerning medical research may often accelerate implementation of research findings, the process of rigorous evaluation must not be hijacked by those with vested financial, professional or political interests. An example of such difficulties is illustrated by a controversy regarding breast cancer screening policy for women under fifty in the US. This story which is described in more detail elsewhere [50] and summarized in Box 2.4 highlights some of the difficulties that we are increasingly likely to face as the world of clinical research becomes more open.

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