Assessing Preferences for Use of Clinical Data Among Individuals with IDD and Their Guardians

评估 IDD 患者及其监护人对临床数据使用的偏好

基本信息

批准号：
9146171
负责人：
Melissa Raspa
金额：
$ 71.74万
依托单位：
RESEARCH TRIANGLE INSTITUTE
依托单位国家：
美国
项目类别：
财政年份：
2015
资助国家：
美国
起止时间：
2015-09-30 至 2018-08-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/9146171
关键词：
Address Adolescent Child Clinical Clinical Data Clinical Research Data Disease Electronic Health Record Equilibrium Family Focus Groups Fragile X Syndrome General Population Genetic Genetic screening method Goals Health Health Communication Healthcare Hereditary Disease Individual Informed Consent Intellectual functioning disability Knowledge Legal Guardians Medicare/Medicaid Methodology Methods Newborn Infant Patient Preferences Patient advocacy Patients Physicians Positioning Attribute Procedures Provider Records Research Research Personnel Specialist Subgroup Surveys Testing Vulnerable Populations Work autism spectrum disorder clinical practice ethical legal social implication health economics health information technology information gathering innovation new technology population survey preference privacy protection public health relevance research study response suspected autism therapy development young adult

项目摘要

DESCRIPTION (provided by applicant): The last decade has witnessed a tremendous shift in health care management through the use of health information technology. Physicians are now mandated to use electronic health records (EHRs) to maintain Medicaid and Medicare reimbursement levels, and many are encouraged to use EHRs to share patients' data across multiple providers. An increasing number of clinicians and translational researchers are seeking to bank biospecimens from individuals with specific conditions in order to have ongoing access to data that can further critical disease discoveries. Preferences among individuals with intellectual and developmental disabilities (IDD) and their guardians regarding the research use of clinical records and data, including EHRs and other data (e.g., biospecimens), is the crux of this proposal. This project will assess the preferences of individuals with IDD and their guardians regarding the research use of clinical records and data. Using an innovative methodology traditionally used in health economics research-discrete choice experiments-we will quantify preferences to guide best practice in informed consent procedures for researchers who seek to use clinical records and data.

描述（由适用提供）：过去十年来，通过使用健康信息技术，见证了卫生保健管理的巨大转变。现在，授权医生使用电子健康记录（EHR）维持医疗补助和医疗保险报销水平，并鼓励许多人使用EHR在多个提供者中共享患者的数据。越来越多的临床医生和翻译的研究人员正在寻求从具有特定条件的个体的生物测量中进行生物测量，以便持续获取可以进一步关键疾病发现的数据。智力和发育障碍的个体（IDD）及其监护人对临床记录和数据的研究使用（包括EHRS和其他数据（例如生物质量激素））的偏好是该提议的关键。该项目将评估IDD及其监护人对研究使用的偏好，使用传统上用于健康经济学研究 - 差异选择实验实验的创新方法，我们将量化偏好，以指导最佳实践，以了解寻求使用临床记录和数据的研究人员的知情同意程序。