Using virtual counselors to overcome genetic literacy barriers: Project VICKY

描述(申请人提供)：人类遗传学的快速发展引发了人们的担忧，即公众是否愿意处理和利用所获得的知识，以做出关于他们健康的明智决定。为了促进“遗传素养”，包括卫生局和疾病控制和预防中心(CDC)在内的几个政府机构主张增加对家庭健康史评估的使用。家庭健康史目前在初级保健中未得到充分利用，这为评估提供了一个理想的指标 基因组风险，是目前可用的最简单的应用基因组工具。基于网络的家族史工具现已公开提供，以方便收集，包括我的家庭健康肖像(MFHP) 来自卫生局局长办公室。尽管像MFHP这样的家族史工具是为普通公众开发的，但有证据表明，由于阅读成绩要求高和导航困难，大部分健康素养有限的普通人口可能无法使用这些工具。先前展示的一种创新方法是使用关系代理(RAS)，即模拟与患者对话的计算机动画角色，以克服卫生保健环境中健康素养和计算机素养不足的挑战。我们开发了一个原型“虚拟咨询师”(VICKY：了解您的家族史的虚拟咨询师)，以收集常见健康状况的家庭健康史信息，包括心脏病、中风、糖尿病、高血压和各种癌症。在拟议的研究中，我们计划改进虚拟咨询师并进行随机对照试验(RCT)，以比较使用VICY和现有MFHP工具在服务不足的初级保健患者群体中收集家庭健康史信息的效果。这项研究的主要目的是1)评估Vicky和MFHP在收集准确的家庭健康历史方面的有效性，以及2)确定准确性是否随着健康素养的不同而变化。这项研究的次要目标将探讨与有效使用计算机化家庭历史工具有关的因素，并审查这些工具对家庭和提供者沟通行为的影响(例如，分享家庭历史信息)。该项目将首次系统地获得VICY和MFHP在以两种语言(英语和西班牙语)在服务不足的患者群体中收集准确的家族史数据方面的有效性验证数据。我们将确定虚拟辅导员是否能够克服使用传统的基于网络的家族史工具的许多现有障碍。这项研究的独特之处在于提供了对从服务不足的人口中收集电子家庭史数据的最有效方法的见解，以便这些数据以后可以与电子健康记录系统整合并广泛传播。研究结果将为这些工具的后续实施工作提供信息，以最大限度地扩大覆盖面和提高有效性，目的是改进系统的记录和初级保健中家庭病史的使用，以确定那些将从预防干预努力中受益的慢性病风险最大的人。

DESCRIPTION (provided by applicant): Rapid advances in human genetics have prompted concerns about the public's readiness to process and utilize the knowledge gained to make informed decisions about their health. To facilitate "genetic literacy," several government agencies including the Office of the Surgeon General and the Centers for Disease Control and Prevention (CDC) have advocated for the increased use of family health history assessment. The family health history, currently underutilized in primary care, offers an ideal proxy to assess genomic risk and is the simplest applied genomic tool available. Web-based family history tools are now publicly available to facilitate its collection, including My Family Health Portrait (MFHP) from the Office of the Surgeon General. Although family history tools like MFHP are developed for general public use, there is evidence to suggest that they may not be accessible to a large portion of the general population with limited health literacy, due to high reading grade demands and navigational challenges. An innovative approach previously demonstrated to overcome challenges with inadequate health literacy and computer literacy in health care settings is the use of Relational Agents (RAs), computer-animated characters that simulate conversations with patients. We have developed a prototype "virtual counselor" (VICKY: Virtual Counselor for Knowing Your Family History) to collect family health history information for common health conditions including heart disease, stroke, diabetes, hypertension and various cancers. In the proposed study, we plan to refine the virtual counselor and conduct a randomized controlled trial (RCT) to compare the efficacy of using VICKY to the existing MFHP tool for collecting family health history information among an underserved primary care patient population. The primary aims of the study are to 1) evaluate the efficacy of VICKY versus MFHP for collecting accurate family health histories and 2) determine whether accuracy varies as a function of health literacy. Secondary aims of the study will explore factors associated with the effective use of computerized family history tools and examine the impact of the tools on family and provider communication behaviors (e.g., sharing of family history information). This project will be the first to systematically obtain validation data on the efficacy of both VICKY and MFHP for collecting accurate family history data among an underserved patient population, in two languages (English and Spanish). We will determine whether a virtual counselor can overcome many of the existing barriers to using traditional web-based family history tools. This study is uniquely situated to provide insight on the most effective approaches to gathering electronic family history data from underserved populations such that they may be later integrated with electronic health record systems and broadly disseminated. Study findings will inform subsequent implementation efforts of these tools to maximize reach and effectiveness, with the goal of improving the systematic documentation and use of family history in primary care to identify those at greatest risk for chronic diseases who would benefit from preventive intervention efforts.