Assessing Impact of Cultural Diversity and Family Health History

Duke University, Durham NC

Investigators

Linked publications, trials & patents

Abstract

SUMMARY Family health history (FHH) is a critical component of genomic medicine to identify patients at risk for hereditary conditions and to contextualize genetic testing results. Despite evidence of its clinical importance, FHH is broadly underutilized and underappreciated in clinical care. Likewise, patients’ perceptions of the importance of FHH may be unclear and therefore, the sharing FHH on patient intake forms is overlooked, resulting in incomplete information shared with the provider. Several other factors may contribute to patients’ lack of completion of FHH intake forms and sharing of FHH information with their provider including cultural factors that impact sharing of health information among family members for some conditions, gender and age differences regarding knowledge of FHH and sharing, literacy, and limited knowledge due to blended or non-traditional family structures. For example, older individuals and women tend to have greater knowledge of family members’ health status. The overall goal of the parent award is to create a flexible and scalable infrastructure for implementing an end-to- end genomic medicine risk assessment and risk management solution that can be disseminated to a wide range of clinical settings and patient populations. Specifically, the project aims to define and deploy a new care delivery model known as “Genomic medicine Risk Assessment Care for Everyone” (GRACE). The central hypothesis is that combining a FHH-driven risk assessment program, a literacy-enhanced interface, family-oriented social networking, and a genetic testing delivery system, will create an end-to-end risk assessment/risk management solution that will both engage and increase the proportion of diverse patients who are identified as at increased risk, who undergo testing, and, when appropriate, who initiate cascade screening among relatives. The FHH software tool, MeTree, will be used as the risk assessment tool in this demonstration project; MeTree generates reports for patients and providers. For this supplement application, we will specifically explore cultural, family, and lifestyle factors that may impact patients’ ability to provide complete FHH information through the MeTree tool through a literature review and semi-structured interviews with patients enrolled in the GRACE study. Specifically, we aim to focus on patient demographics such as race/ethnicity, culture, and LGBTQ+ communities to better define patient barriers and contribute to the improved FHH data collection as part of the GRACE delivery model.