Box 124 Roles of patient advocacy groups relevant to cancer trials

Providing potential patients with information on

♦ The treatment modalities used to treat cancer and their adverse effects and how they can be avoided or ameliorated

♦ Clinical trials and what is involved in agreeing to enter a trial

♦ Why randomized trials are needed

♦ Ethical issues, including patients' rights to withdraw from a trial without having to give reasons

Providing cancer trials centres and research groups with advice on

♦ Patients' concerns and perceived priorities

♦ The wording of patient information leaflets and consent forms

Cancer trials centres and clinical research groups are able to establish long-term links with such organizations. They can assist greatly in providing cancer patients and their families with information on the types of treatment and their adverse effects, on the sorts of investigations that are likely to be needed, and on current randomized trials, and can explain why treatments being compared often need to be assigned at random. They can provide many other forms of support as well. They are a source of independent advice on patients' concerns and on what agreeing to take part in a trial is likely to involve for patients. They relay, to cancer researchers, patients' concerns and views on research priorities. They can also be of great help in advising on the wording of patient information sheets and consent forms for randomized trial protocols.

When good collaborative relationships have been established with patient advocacy groups, these groups can make informed and practical suggestions about proposed new trials and how they are likely to be perceived by patients.

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