Deaf ACCESS: Adapting Consent through Community Engagement and State-of-the-art Simulation

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PROJECT SUMMARY/ABSTRACT The U.S. Deaf community – a minority group of 500,000 people who use American Sign Language – is one of the most understudied populations in biomedical research. One reason is the frequent use of research methods that are not accessible to Deaf people (for example, random-digit-dial telephone surveys). Another reason is the major difference in points-of-view between researchers and Deaf people. Researchers often aim to “cure” or “fix” hearing loss. Deaf people, however, do not view themselves as needing to be “fixed,” but as members of a rich culture with shared experience, history, art, and literature. These barriers have contributed to a long history of mistreatment of Deaf people in the research world, resulting in their mistrust of researchers and reluctance to participate in biomedical research studies. In response to these issues, we will lead Deaf ACCESS: Adapting Consent through Community Engagement and State-of-the-art Simulation. Collaborating with Deaf community members as part of our research team, we will adapt informed consent procedures to make them more Deaf-friendly, and then use medical simulation to train research assistants how to appropriately recruit and enroll Deaf research participants. We aim to: (1) identify the barriers and facilitators to Deaf people’s engagement in biomedical research, with an emphasis on the informed consent process, by holding four Deaf community forums and three focus groups at Deaf community cultural institutions; (2) develop a training intervention based on lessons learned from Aim 1, in which Deaf community members teach research assistants to deliver culturally appropriate informed consent using an American Sign Language interpreter; and (3) test the feasibility and acceptance of the intervention during simulation-based training sessions with five hearing research assistants who currently conduct informed consent at UMass Medical School (and who have no prior experience working with Deaf individuals). These aims are based on our previous pilot research, Simulation-based Community-engaged Research Intervention for Informed Consent Protocol Testing and Training, which incorporated culturally and linguistically competent methods into the informed consent process using the expertise of African-American and Latino community members. We are ideally suited to achieve these aims as a diverse research team committed to a community-engaged process of multi-directional learning and sharing. Our results will support a larger trial of Deaf ACCESS and will produce training products with much potential for distribution and replication. This work will lay the foundation for a sustainable program of research that shifts how we approach and engage the Deaf community, increasing the number of Deaf people who participate in biomedical research studies and encouraging more Deaf people to become actively engaged in the research world.