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.

Public Health Relevance

Family health history assessment remains the current gold standard for clinical risk assessment and is considered a genomic tool and proxy to genetic predisposition that can serve as a means to better guide and personalize medical care and disease prevention. This study will examine the validity of using a computer- based virtual counselor program to document accurate family history information among underserved patients who face numerous literacy-related barriers to using traditional web-based family history tools. Results from the study will shape subsequent implementation efforts to improve access to family history tools that can facilitate the identification of those at greatest chronic disease risk who would benefit from preventive intervention efforts.

National Institute of Health (NIH)
National Human Genome Research Institute (NHGRI)
Research Project (R01)
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Boyer, Joy
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Boston University
Public Health & Prev Medicine
Schools of Public Health
United States
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