Melissa B Gilkey1. 1. University of North Carolina Lineberger Comprehensive Cancer Center, CB 7440, Rosenau Hall, 3rd Floor, Chapel Hill, NC, 27599-7440, USA, gilkey@email.unc.edu.
Abstract
PURPOSE: Including cancer survivors in the peer review of cancer-related research is increasingly valued as a strategy for bringing the "patient perspective" to discussions of research merit and human subject protection. Because integrating lay stakeholders into peer review poses challenges, this qualitative study explored the perspectives of experienced patient advocates to identify programmatic supports for survivors' participation. METHODS: Semi-structured telephone interviews were conducted with a purposive sample of 19 cancer survivors and 6 administrators involved in the National Cancer Institute's Consumer Advocates in Research and Related Activities program. Audio-recorded interviews were transcribed verbatim and analyzed via thematic content analysis. Participants were highly educated and included survivors of breast, prostate, and blood-related cancers. RESULTS: Interviewees emphasized the importance of adequately preparing survivors to serve as advocates. Given the intellectual challenge of peer review, interviewees noted the need for intensive and ongoing training on how to review proposals, and they identified mock reviews and peer mentoring as effective strategies to complement didactic instruction. Participants also stressed the need to address social challenges inherent in advocate-scientist encounters. In addition to training for both advocates and scientists, participants reported that opportunities for informal social interaction were important for facilitating collaboration. Finally, participants recommended structuring advocates' role so as to give them a voice via equal voting privileges and protected opportunities to speak. CONCLUSIONS: Programs that seek to include cancer survivors in peer review can prepare advocates for the intellectual and social challenges of working with scientists through careful attention to training, networking, and programmatic design. IMPLICATIONS FOR CANCER SURVIVORS: Cancer survivors have been leaders in developing a role for patient advocates in the peer review of research. As the concept of patient-centered outcomes continues to gain currency, lessons learned from early programs for patient inclusion in peer review can help to inform future efforts aimed at giving patients a voice in shaping agendas for health-related research.
PURPOSE: Including cancer survivors in the peer review of cancer-related research is increasingly valued as a strategy for bringing the "patient perspective" to discussions of research merit and human subject protection. Because integrating lay stakeholders into peer review poses challenges, this qualitative study explored the perspectives of experienced patient advocates to identify programmatic supports for survivors' participation. METHODS: Semi-structured telephone interviews were conducted with a purposive sample of 19 cancer survivors and 6 administrators involved in the National Cancer Institute's Consumer Advocates in Research and Related Activities program. Audio-recorded interviews were transcribed verbatim and analyzed via thematic content analysis. Participants were highly educated and included survivors of breast, prostate, and blood-related cancers. RESULTS: Interviewees emphasized the importance of adequately preparing survivors to serve as advocates. Given the intellectual challenge of peer review, interviewees noted the need for intensive and ongoing training on how to review proposals, and they identified mock reviews and peer mentoring as effective strategies to complement didactic instruction. Participants also stressed the need to address social challenges inherent in advocate-scientist encounters. In addition to training for both advocates and scientists, participants reported that opportunities for informal social interaction were important for facilitating collaboration. Finally, participants recommended structuring advocates' role so as to give them a voice via equal voting privileges and protected opportunities to speak. CONCLUSIONS: Programs that seek to include cancer survivors in peer review can prepare advocates for the intellectual and social challenges of working with scientists through careful attention to training, networking, and programmatic design. IMPLICATIONS FOR CANCER SURVIVORS: Cancer survivors have been leaders in developing a role for patient advocates in the peer review of research. As the concept of patient-centered outcomes continues to gain currency, lessons learned from early programs for patient inclusion in peer review can help to inform future efforts aimed at giving patients a voice in shaping agendas for health-related research.
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