Editor—In the previous letter Galbraith et al identify a further major obstacle and hindrance—the procedures for gaining honorary contracts required by all those conducting research in the NHS.1
As a voluntary, independent, self employed individual patient-researcher, I have been a steering group patient member in various research projects at different institutions since 1995. In November 2005 I received from a university research and commercial division “duplicate originals” of a formal agreement for signature for participation as a steering group member in a Department of Health funded project to undertake a systematic review. To say that the requirements were onerous understates the case.
Public involvement in research is encouraged, indeed stipulated by the Department of Health and related research commissioning bodies. The National Cancer Research Institute and National Cancer Research Network have defined the practicalities of involving members of their consumer liaison group in research. This includes setting out in detail, for example, how honorariums and other payments for attendance at meetings on behalf of these institutions should be made.
The research governance approval system obstructs and delays research unnecessarily: this is unethical and ultimately reduces patients' length and quality of life. The new professionalism that is being encouraged in the Royal College of Physicians' report calls for a responsible engagement that draws in a well informed public alongside the medical profession.2 Where better than to start here? Testing treatments should be everyone's business.3,4
Competing interests: None declared.
References
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