The public and our patients

Last, but by no means least, we must involve our patients and the public in the debate. In an issue of the BMJ (12 April 1997), devoted to informed consent, comments were invited on the acceptable limits of informed consent in medical research. This resulted in a huge volume of correspondence and debate. Lisa Power, a health advocacy manager for the Terence Higgins Trust wrote, "There needs to be an understanding that giving patients or potential patients some say in the design and approval of trials is a positive process and not just a hoop to jump through. This involvement can stretch from trial design to writing information sheets and sitting on ethics committee." Often patients are only involved in research as altruistic volunteering subjects. At our peril do we ignore them or abuse them. Mostly they are never given feedback on the outcome of the research, or indeed are mostly not informed of the conclusions of research or even if it was ever completed. When research misconduct has occurred patients are most likely to learn this from the media. Thus, if in the UK we finally get to grips with the issue, involvement of lay people is absolutely essential.

We cannot expect patients to volunteer in a trusting relationship, that between researcher and subject, unless they have confidence in the processes and in the communication that must be at its heart. The more involvement of patients in all research arenas, be it grant-giving bodies, ethics committees, monitoring and auditing, and with a spirit of openness and trust the better. Whilst fraud and misconduct in medical research continues we are all losers. Within a healthy framework that discourages, prevents, detects, and metes out justice where appropriate, every one is a winner, there can be no losers.

Declarations of interest

The author was a member of the 1995 independent inquiry into the fraudulent articles published in the British Journal of Obstetrics and Gynaecology. She was also a member of the Edinburgh Consensus Panel on Fraud and Misconduct in Medical Research, 2000.

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