Publishing information about ongoing clinical trials for patientsBMJ 2010; 340 doi: https://doi.org/10.1136/bmj.c725 (Published 24 February 2010) Cite this as: BMJ 2010;340:c725
- Fiona Godlee, editor1,
- Iain Chalmers, coordinator 2
- 1BMJ, London WC1H 9JR
- 2James Lind Initiative, Oxford OX2 7LG
- Correspondence to: F Godlee
- Accepted 25 January 2010
Cancer patients face many challenges, but in two respects they may be more fortunate than patients with other conditions in the United Kingdom. CancerHelp UK provides them with access to specially written information about clinical trials of cancer treatments in the UK and a dedicated telephone helpline that they can use to discuss potentially relevant trials with specially trained oncology nurses.1 Why do patients with other conditions not have similar facilities?
The demand from patients for information about ongoing trials has been clear and growing for many years. They want this information for various reasons, including a wish to participate in research.2 3 4 5 6 Their motives for participation include wanting access to treatments that are only available within the context of research; an altruistic wish to help others; and as a way of dealing with uncertainties about which treatment option to choose. Furthermore, a recent review of evidence about the impact of participation in clinical trials found that it helps to ensure the acceptability of clinical trials and to increase recruitment to all types of research.7
The continuing lack of information to help people decide whether and how to take part in research is surprising. The government has put great emphasis on patient choice, and the Department of Health declared five years ago that because “health research is conducted for the benefit of patients, users, care professionals, and …
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