Benefits and drawbacks of including consumer reviewers in the scientific merit review of breast cancer research

Background: This study assessed participant opinions about inclusion of breast cancer survivors as lay representatives in a scientific and technical merit review of proposals for the 1995 Department of Defense Breast Cancer Research Program (DOD BCRP). Methods: The evaluation employed a prepanel and postpanel survey design, which was intended to elicit feedback about attitudes, perceptions, and beliefs toward collaborative consumer and scientist participation in scientific merit review. Qualitative methods were used to describe the consumers' and scientists' responses, to explore the significance of this interaction, and to gain an understanding of the benefits and disadvantages of bringing these participants together. Results: Both groups were initially troubled about the consumers' lack of scientific background and questioned their qualifications and preparation for participation in a scientific panel. In particular, consumers were concerned that their judgments would not be taken seriously by scientists, a concern somewhat lessened by participation. After the meeting, scientists viewed the consumers as hard-working, dedicated survivors and advocates and endorsed the presence of carefully chosen lay panel members. Scientists were troubled that consumers potentially would have an impact on voting and on the subsequent scoring of proposals, a concern that was not validated by quantitative findings. Conclusions: As a result of these data, the DOD BCRP continues to embrace clarify the nature of collaborative participation in scientific merit review.