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

项目概要/摘要 美国聋人社区-一个使用美国手语的50万人的少数群体-是世界上最大的聋人社区之一。 在生物医学研究中最缺乏研究的人群。原因之一是研究的频繁使用 聋人无法使用的方法（例如，随机数字拨号电话调查）。另一 原因是研究人员和聋人之间的主要观点不同。研究人员经常瞄准 来“治愈”或“修复”听力损失。然而，聋人并不认为自己需要“固定”，而是认为 拥有丰富文化的成员，他们有着共同的经历、历史、艺术和文学。这些障碍促成了 聋人在研究领域长期受到虐待，导致他们不信任研究人员 以及不愿意参与生物医学研究。 针对这些问题，我们将领导聋人访问：通过社区参与调整同意 和最先进的模拟技术作为我们研究团队的一部分，我们与聋人社区成员合作， 将调整知情同意程序，使其对聋人更友好，然后使用医疗模拟， 培训研究助理如何适当地招募和登记聋人研究参与者。我们的目标是：（1） 确定聋人参与生物医学研究的障碍和促进因素，重点是 通过在聋人中心举办四次聋人社区论坛和三次焦点小组会议， 社区文化机构;（2）根据目标1的经验教训， 聋人社区成员教研究助理提供文化上适当的知情同意， 使用美国手语翻译;（3）测试干预的可行性和可接受性 在与五名听力研究助理的模拟培训课程中， 同意在马萨诸塞大学医学院（和谁没有与聋人个人工作的经验）。 这些目标是基于我们以前的试点研究，基于模拟的社区参与研究 知情同意协议测试和培训的干预措施，其中包括文化和语言方面的内容 利用非裔美国人和拉丁裔的专业知识，采用适当的方法进行知情同意过程 社区成员。我们非常适合实现这些目标作为一个多元化的研究团队致力于 社区参与的多方向学习和分享过程。我们的结果将支持一个更大的试验， 聋人访问，并将产生培训产品，具有很大的潜力，分发和复制。这项工作 将为可持续研究计划奠定基础，改变我们接触和参与聋人的方式 社区，增加参加生物医学研究的聋人人数， 鼓励更多的聋人积极参与研究世界。

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.