Using virtual counselors to overcome genetic literacy barriers: Project VICKY

描述（由申请人提供）：人类遗传学的快速进步引起了人们对公众是否准备好处理和利用所获得的知识来就其健康做出明智决定的担忧。为了促进“基因素养”，包括外科医生办公室和疾病控制与预防中心 (CDC) 在内的多个政府机构都提倡增加使用家族健康史评估。目前在初级保健中未充分利用的家庭健康史提供了一个理想的评估指标 基因组风险，是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，以方便其收集，包括“我的家庭健康肖像”(MFHP) 来自外科医生办公室。尽管像 MFHP 这样的家族史工具是为一般公众使用而开发的，但有证据表明，由于较高的阅读等级要求和导航挑战，大部分健康素养有限的普通人群可能无法使用它们。先前展示的一种创新方法可以克服医疗保健环境中健康素养和计算机素养不足的挑战，即使用关系代理 (RA)，即模拟与患者对话的计算机动画角色。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）来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，我们计划完善虚拟咨询师并进行随机对照试验（RCT），以比较使用 VICKY 与现有 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功效。该研究的主要目的是 1) 评估 VICKY 与 MFHP 收集准确家庭健康史的功效，以及 2) 确定准确性是否随健康素养的变化而变化。该研究的次要目标将探讨与有效使用计算机化家族史工具相关的因素，并研究这些工具对家庭和提供者沟通行为（例如，共享家族史信息）的影响。该项目将是第一个以两种语言（英语和西班牙语）系统地获取 VICKY 和 MFHP 有效性的验证数据，以在服务不足的患者群体中收集准确的家族史数据。我们将确定虚拟顾问是否可以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，提供了从服务不足的人群中收集电子家族史数据的最有效方法的见解，以便这些数据随后可以与电子健康记录系统集成并广泛传播。研究结果将为这些工具的后续实施工作提供信息，以最大限度地提高覆盖范围和有效性，目标是改进初级保健中家族史的系统记录和使用，以确定那些慢性病风险最大的人，他们将受益于预防性干预工作。

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.