Research advisory networks provide a forum for researchers and advocates to collaborate on topics of mutual interest, with the goal of incorporating the patient’s perspective into developing research studies and grants. This researcher/advocate collaboration also meets a requirement of some national funding agencies which have begun to request the inclusion of at least one patient advocate on their grants.
Advocates are typically cancer survivors who volunteer their time and effort to indirectly help other patients in the same situation and to contribute their unique perspective and knowledge. Advocates may also be caregivers. Being involved in a research advisory network provides advocates with training and education to further develop their skills and knowledge.
Researchers involved in these disease-specific networks can range from basic scientists to clinicians, whose common interest is to provide patients with access to more robust and relevant treatment. Researchers involved in the network have the opportunity to draw on the unique experience and perspectives of the advocates.
Members meet regularly to become educated on topics such as the biological bases of cancer, current cancer treatments, how to improve patient accrual. The meetings also provide a venue for advocates to hear about specific projects in which they can become actively involved with individual researchers, to help develop tools clinicians can use with patients, and to share information and provide feedback on relevant educational/informational and fundraising opportunities.
Current disease-specific research advisory networks at the UWCCC: