A Deliberative Approach to Develop Autism Data Collection in Massachusetts

在马萨诸塞州开发自闭症数据收集的审慎方法

• 批准号: 8803611
• 负责人: Alexandra Bonardi
• 金额: $ 18.58万
• 依托单位: UNIV OF MASSACHUSETTS MED SCH WORCESTER
• 依托单位国家: 美国
• 财政年份: 2014
• 资助国家: 美国
• 起止时间: 2014-09-30 至 2016-09-29
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8803611
• 关键词: Deliberative; Approach; Develop; Autism; Data

DESCRIPTION (provided by applicant): Researchers from the University of Massachusetts Medical School (UMMS) Eunice Kennedy Shriver Center will lead a Citizen's Jury deliberative approach to develop priorities for an integrated autism data system in Massachusetts. The Massachusetts Executive Office of Health and Human Services is the project sponsor. The state agency is seeking the public's input into the design of an integrated data system to track diagnosis, treatment, services, and outcomes of individuals with autism in order to improve coordination of care and disseminate information. The research team will convene a 24 member Citizen's Jury, including individuals on the autism spectrum. Using a mix of face to face and on-line interaction, they will learn about and deliberate about the multiple perspectives related to privacy, control of individual data, and the use of integrated datasets to improve health outcomes research and policy development. This is an innovative demonstration of the use of a Citizen's Jury approach in a mixed population with disability. Clinical and communication supports will be provided to ensure successful participation by all members. Evaluators will examine process and outcome measures, including the revised Discourse Quality Index. The results of the deliberation will be presented to Executive Office of Health and Human Services in a written and video summary.

描述（由申请人提供）：来自马萨诸塞州医学院（UMMS）尤尼斯肯尼迪施赖弗中心大学的研究人员将领导一个公民陪审团审议的方法，以制定马萨诸塞州综合自闭症数据系统的优先事项。马萨诸塞州卫生与公众服务行政办公室是该项目的赞助商。国家机构正在寻求公众对综合数据系统设计的投入，以跟踪自闭症患者的诊断，治疗，服务和结果，以改善护理协调和传播信息。研究小组将召集一个由24名成员组成的公民陪审团，其中包括自闭症患者。使用面对面和在线互动的组合，他们将学习和审议有关隐私，个人数据的控制，以及使用综合数据集，以改善健康结果的研究和政策制定的多个角度。这是在混合残疾人口中使用公民陪审团方法的一个创新示范。将提供临床和沟通支持，以确保所有成员的成功参与。评估人员将审查过程和结果措施，包括修订后的话语质量指数。审议结果将以书面和视频摘要的形式提交给卫生与公众服务执行办公室。