Conferring with patient advocacy groups

The trial management group should already have established collaboration with suitable consumer representatives or patient advocacy groups in the design of the trial and the drafting of the protocol. During the conduct of the trial, there may well be topics, such as the following, on which their advice would be helpful and important.

♦ Recruitment may be slow because high proportions of potentially eligible patients are declining to take part. Patient advocacy groups may be aware of misunderstandings about the trial or of reasons why it might be unattractive to patients. They maybe able to advise on the rewording of the patient information sheet, and may be able to allay patients' concerns through their publications or their direct contact with patients.

♦ They can publish articles in their newsletters or other publications, explaining why the trial is being done and why it is important.

♦ They can deal objectively with queries raised by patients over the telephone.

♦ They can inform patients about the trial, and advise them how to seek the chance to collaborate, if they wish to do so.

It is important to keep patient advocacy groups fully informed on the progress of the trial, to assure them of its continuing relevance and importance, and to answer any questions they raise.

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