Phase 1 – Community Forums Deaf ACCESS: Adapting Consent Through Community Engagement and State-Of-The-Art Simulation [English and Spanish versions]

A Spanish translation of this publication is available to download under Additional Files. In 2016, the University of Massachusetts Medical School (UMMS), in partnership with Brown University, was awarded a 2-year grant from the National Institute on Deafness and Other Communication Disorders (NIDCD) to improve Deaf people’s trust and involvement in biomedical research. The Deaf ACCESS: Adapting Consent through Community Engagement and State-of-the-art Simulation research team is led by Melissa Anderson from UMMS and Co-Investigator Timothy Riker from Brown University. The study team also includes four Deaf Community Advisors. Because the research team includes five Deaf members, American Sign Language is the primary language used while working together. The first research brief for the Deaf ACCESS project at UMass Medical School related to Phase 1: Community Forums is available in ASL

Deaf ACCESS: Adapting Consent through Community Engagement and State-of-the-Art Simulation [English and Spanish versions]

A Spanish translation of this publication is available to download under Additional Files. All human subjects’ research involves an informed consent process, during which potential participants learn about research procedures, possible risks of being in the research study, and then decide if they would like to participate in the study. This information is usually communicated in written or spoken English, rather than translated into ASL, making the process inaccessible to the Deaf community. In addition, the Deaf community often feels mistrust toward researchers and strong resistance to enrolling in research studies because of the long history of mistreatment of Deaf people in the research world.2-4 Researchers must develop ways to improve access and build trust with the Deaf community to include this underserved and at-risk population in human subjects’ research studies. In 2016, the University of Massachusetts Medical School (UMMS), in partnership with Brown University, was awarded a 2-year grant from the National Institute on Deafness and Other Communication Disorders (NIDCD) to improve Deaf people’s trust and involvement in biomedical research. The Deaf ACCESS: Adapting Consent through Community Engagement and State-of-the-art Simulation research team is led by Melissa Anderson from UMMS and Co-Investigator Timothy Riker from Brown University

Deaf Qualitative Health Research: Leveraging Technology to Conduct Linguistically and Sociopolitically Appropriate Methods of Inquiry

One of the most understudied health disparity populations in the United States is the Deaf community-a sociolinguistic minority group of at least 500,000 individuals who communicate using American Sign Language. Research within this population is lacking, in part, due to researchers\u27 use of methodologies that are inaccessible to Deaf sign language users. Traditional qualitative methods were developed to collect and analyze participants\u27 spoken language. There is, therefore, a paradigm shift that must occur to move from an auditory data schema to one that prioritizes the collection and analysis of visual data. To effectively navigate this shift when working with Deaf sign language users, there are unique linguistic and sociopolitical considerations that should be taken into account. The current article explores these considerations and outlines an emerging method of conducting qualitative analysis that, we argue, has the potential to enhance qualitative researchers\u27 work regardless of the population of focus