CONSENT-ASL Toolkit for Deaf and Hard of Hearing People

针对聋哑人和听力障碍人士的 CONSENT-ASL 工具包

• 批准号: 10682412
• 负责人: Raja S. Kushalnagar
• 金额: $ 13.79万
• 依托单位: GALLAUDET UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-09-01 至 2024-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10682412
• 关键词: Access to Information; Adoption; American Sign Language; Anecdotes; Bioethics Consultants; Clinical Data; Clinical Research; Clinical Trials; Communication; Communities; Consent; Data; Decision Making; Doctor of Philosophy; Eligibility Determination; Exclusion; Focus Groups; Funding; Goals; Health; Health Personnel; Health Promotion; Healthcare; Hearing; Information Dissemination; Information Resources; Informed Consent; Institution; Institutional Review Boards; Knowledge; Language; Leadership; Linguistics; Link; Maintenance; Oral; Outcome; Participant; Patient-Centered Care; Patients; Personal Satisfaction; Persons; Population; Principal Investigator; Process; Qualifying; Reach, Effectiveness, Adoption, Implementation, and Maintenance; Reduce health disparities; Reporting; Research; Research Personnel; Research Support; Resources; Risk; Site; Strategic Planning; Surveys; Testing; Training; Underrepresented Populations; Underserved Population; United States National Institutes of Health; United States National Library of Medicine; Universities; Work; access disparities; deaf; design; disparity reduction; dissemination strategy; experience; hard of hearing; health equity; health literacy; hearing impairment; high risk population; improved; improved outcome; medically underserved; member; mobile application; poor health outcome; prospective; public health relevance; research study; usability; user centered design; web site

There is a critical need for a user-centered, accessible informed consent toolkit. The purpose of this G08 application is to develop and deploy an accessible informed consent app- based toolkit to support two target audiences: 1) deaf patients who wish to participate in research studies and 2) clinical research coordinators (CRCs) and principal investigators (PIs) who do not have the resources to make their informed consent materials accessible to prospective participants who are deaf. This project is low-risk and high in impact because it builds on the leadership team’s research with the medically underserved Deaf community. Knowledge gained from the proposed activities will therefore have great potential to bring useful, usable resources to deaf signers and who wish to participate in research or clinical trials. Finally, the resulting resources will fill a gap prioritized in Goals 1&2 of NLM's Strategic Plan Goals because the proposed work will support research through information dissemination strategies that enhance information delivery of research participation and informed consent to underserved, overlooked groups such as deaf people who use ASL.

迫切需要一个以用户为中心、易于访问的知情同意工具包。 此 G08 应用程序的目的是开发和部署一个可访问的知情同意应用程序 - 基于工具包来支持两个目标受众：1）希望参与的聋哑患者 研究和 2) 临床研究协调员 (CRC) 和主要研究者 (PI) 谁没有资源向他人提供他们的知情同意材料 未来的聋人。 该项目风险低、影响大，因为它建立在领导团队的 与医疗服务不足的聋人社区进行研究 从聋哑人那里获得的知识。 因此，拟议的活动将具有为聋人带来有用、可用资源的巨大潜力 签署者和希望参与研究或临床试验的人。 最后，由此产生的资源将填补 NLM 战略目标 1 和 2 优先考虑的空白 规划目标，因为拟议的工作将通过信息支持研究 加强研究参与和信息传递的传播策略 获得服务不足、被忽视的群体（例如使用 ASL 的聋人）的知情同意。

项目成果

Barriers and facilitators to the inclusion of deaf people in clinical trials.

将聋人纳入临床试验的障碍和促进因素。

• DOI: 10.1177/17407745231177376
• 发表时间: 2023
• 期刊: Clinical trials (London, England)
• 作者: Kushalnagar,Poorna;Nicolarakis,Onudeah;Mirus,Gene;Anderson,Melissa;Burke,Teresa;Kushalnagar,Raja
• 通讯作者: Kushalnagar,Raja