A patient advisory board: Improving breast cancer clinical trials

2012 Conference

Abstract: The Dutch Cancer Society (KWF) and the Breast Cancer Study Group (BOOG) believe that design and execution of clinical trials can be improved when patients become actively involved. A qualitative study is conducted – involving breast cancer patients, researchers and stakeholder organisations – to explore possibilities for active patient involvement in breast cancer clinical trials.

An advisory committee of six female breast cancer patients was established. Facilitated by a researcher they produced an advisory report during three meetings on possibilities for active involvement clinical trials. The advisory committee formulated three recommendations:

1. appointment of an advisory committee of patients who monitor the entire process of clinical trials (from design to follow-up)
2. inclusion of a patient (representative) in the research team as an equal member
3. involvement of individual patients for different aspects in a clinical trial. Within each phase of a clinical trial (design, information and recruitment, treatment, and follow-up and feedback) several aspects were identified in which patients’ input from the three different levels has additional value, for example contribution to questionnaires, outcome measurements, logistics, patient information, sharing experiences, feedback. In a dialogue meeting with different stakeholders, feasibility and precondition for successful implementation of the advice are discussed.