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

• 批准号: 9334273
• 负责人: Melissa Raspa
• 金额: $ 69.64万
• 依托单位: RESEARCH TRIANGLE INSTITUTE
• 依托单位国家: 美国
• 财政年份: 2015
• 资助国家: 美国
• 起止时间: 2015-09-30 至 2019-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9334273
• 关键词: Address; Adolescent; Child; Clinical; Clinical Data; Clinical Research; Data; Disease; Electronic Health Record; Equilibrium; Ethics; Family; Focus Groups; Fragile X Syndrome; General Population; Genetic; Genetic screening method; Goals; Health; Health Communication; Healthcare; Hereditary Disease; Impairment; Individual; Informed Consent; Intellectual functioning disability; Knowledge; Legal Guardians; Medicaid; Medicare; 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; experimental study; health economics; health information technology; innovation; legal implication; new technology; population survey; preference; privacy protection; public health relevance; response; social implication; suspected autism; therapy development; translational scientist; young adult

 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。

项目成果

Preferences for Accessing Electronic Health Records for Research Purposes: Views of Parents Who Have a Child With a Known or Suspected Genetic Condition.

• DOI: 10.1016/j.jval.2020.06.016
• 发表时间: 2020-12
• 期刊: Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research
• 作者: Raspa M;Paquin RS;Brown DS;Andrews S;Edwards A;Moultrie R;Wagner L;Frisch M;Turner-Brown L;Wheeler AC
• 通讯作者: Wheeler AC

Ethical, Legal, and Social Issues Related to the Inclusion of Individuals With Intellectual Disabilities in Electronic Health Record Research: Scoping Review.

与将智力障碍人士纳入电子健康记录研究相关的伦理、法律和社会问题：范围界定审查。

• DOI: 10.2196/16734
• 发表时间: 2020
• 期刊: Journal of medical Internet research
• 影响因子: 7.4
• 作者: Raspa,Melissa;Moultrie,Rebecca;Wagner,Laura;Edwards,Anne;Andrews,Sara;Frisch,MaryKatherine;Turner-Brown,Lauren;Wheeler,Anne
• 通讯作者: Wheeler,Anne

Preferences for the research use of electronic health records among young adults with fragile X syndrome or autism spectrum disorder.

• DOI: 10.1016/j.dhjo.2020.100927
• 发表时间: 2020-10
• 期刊: Disability and health journal
• 影响因子: 4.5
• 作者: Wagner L;Frisch M;Turner-Brown L;Andrews S;Edwards A;Moultrie R;Alvarez Rivas A;Wheeler A;Raspa M
• 通讯作者: Raspa M