| Including consumer advocates in the peer review of cancer-related research proposals is increasingly valued as a strategy for bringing the "patient perspective" to discussions of research merit and human subjects protection. Little is known, however, about how consumer advocates fulfill their role. This study investigated the participation of consumer advocates in peer review through the National Cancer Institute's Consumer Advocates in Research and Related Activities (CARRA) program. In 2010-2011, 19 CARRA members were interviewed by phone to explore what advocates intend to contribute to peer review, how they work with scientist panel members, and whom they aim to represent. Data were coded through a process of qualitative content analysis.;In describing the patient perspective, interviewees emphasized the bodily experience of cancer which they defined in the physical, emotional, and social terms of the "lived body." Through pragmatic critiques and an empathic presence, advocates drew from their experiential knowledge of the lived body in their efforts to improve informed consent procedures, minimize participant burden, improve the recruitment of under-represented populations, and assess the merit of research outcomes. When asked, most advocates expressed a desire to represent all cancer patients regardless of cancer type or demographic membership. More implicitly, however, advocates' comments indicated they felt a special obligation to speak for the most vulnerable.;Overall, the epistemological tensions between scientific and embodied forms of knowledge worked to discourage advocates from fully embracing their experiential expertise and social justice orientation. Given that CARRA is now a well-established program, the time may be ripe for bringing advocates together in an attempt to formulate a "patient agenda" that would more explicitly set forth a set of goals to guide advocates' work. The findings of this study suggest that such a project would begin by acknowledging a special obligation to vulnerable populations and would look to the research literature in health disparities as one resource for linking the personal, the collective, and the scientific. |
