COMMUNITY
Natalia Xiomara, JUNTA’s, program coordinator for Economic Development & Employment.
The registry features a searchable clinical trials database that interfaces with clinicaltrials.gov, as well as pages listing trials recruiting healthy volunteers; frequently asked questions about clinical research; and discussion of the considerations that people should weigh when deciding whether to participate in a study. The website also features stories about Yale discoveries made possible by volunteer participation. As part of a proactive approach to recruiting patients for clinical trials, ycci is currently working with a local advertising firm to develop a full-fledged marketing campaign that will focus on both general and disease-specific patient recruitment. Plans also include developing brochures about clinical trials and creating a video about trials at Yale to be posted on ycci’s website as well as YouTube; it will also be shown at health fairs. Expanding the participation of minorities and other underrepresented populations in clinical trials is an important component of ycci’s recruitment efforts. ycci has recently developed two new partnerships to assist this effort: one with junta, the oldest Latino advocacy group in the New Haven area; and a second partnership with leaders of the African Methodist Episcopal Zion Church. Representatives of these groups will serve as cultural ambassadors to Yale’s research programs, working both within the community and with Yale faculty to develop new recruitment approaches. These community leaders will receive intensive training in all aspects of clinical research theory and practice. This
Lois Sadler, PhD, RN, co-director of Community-Based Research and Engagement for YCCI and associate professor at YSN and the Yale Child Center, at the Peabody Museum of Natural History. YCCI co-sponsored two exhibits at the museum through a Science Education Partnership Award (SEPA).
training will enable them to become research advocates in the community and educate members of their respective groups about the research process. Involving these leaders on a deeper level and earlier in the process—at the stage of research design—will ensure that clinical studies incorporate the needs of the community and at the same time foster trust, thereby enhancing community participation throughout the research process. ycci’s goal in developing both partnerships is to increase the participation of Hispanics and African Americans in clinical trials that directly benefit these groups. ycci recognizes that broadening its communitybased research programs involves listening not only to the community but also to investigators. Those engaged in community-based research need different kinds of services from those established by ycci under the ctsa for investigators engaged in university-based clinical and translational research. The partnership with junta is an excellent example of the kind of partnership ycci seeks to develop, as junta will provide not only insights into the Hispanic population but also Spanish translation services for consent forms and other study documents. The new website will also take these needs into account via a gateway offering access to Yale’s practice-based research network; information on translation services; access to community advisors who can assist in reaching specific populations; and help in setting up recruitment events and educational opportunities related to community-based research. Training the Next Generation of Community-Based Researchers Training investigators in community-based research methodology plays a critical role in ycci’s drive to support this research. These efforts have been greatly expanded under the ctsa and extend beyond educating the faculty to include educational programs at schools and other community-based institutions that reach all age groups.