Family health history and genetic services—the East Baltimore community stakeholder interview project

Abstract

Discussion of family health history (FH) has the potential to be a communication tool within families and with health providers to stimulate health promotion related to many chronic conditions, including those with genetic implications for prevention, screening, diagnosis, treatment. Diverse communities with disparities in health outcomes may require different approaches to engage individuals and families in the evolving areas of genetic risk communication, assessment, and services. This work was a partnership of a local urban agency and academic genetics professionals to increase understanding of community concerns and preferences related to FH and genetic awareness. Thirty community stakeholders in the East Baltimore area participated in structured interviews conducted by community members. We identified key themes on family health history FH, risk assessment, and genetic services. Forty-three percent (18/27) of community stakeholders thought families in East Baltimore did not discuss family health history FH with doctors. Stakeholders recognized the benefits and challenges of potential actions based on genetic risk assessment and the multiple competing priorities of families. FH awareness with community engagement and genetics education were the major needs identified by the participants. Research undertaken in active collaboration with community partners can provide enhanced consumer perspectives on the importance of family health history and its potential connections to health promotion and prevention activities.

Modernizing family health history: achievable strategies to reduce implementation gaps

“…The authors declare no competing interests. • Educate patients about the importance of inherited genetic risks and FHH's role in uncovering them (Sanghavi et al 2019) • Disseminate engaging, online, public-oriented, learning experiences about FHH • Leverage existing intrafamilial interaction behaviors and patterns to facilitate FHH sharing and collection (Hood 2018) • Exercise linguistically and culturally aware methods and apply knowledge of unique barriers in communities with health disparities and diverse backgrounds (Hood 2018;Lin et al 2018;Sanghavi et al 2019;Malen et al 2016;Cerda et al 2019) • Increase attentiveness to FHH and enhance recollection among patients by facilitating collection, documentation, and sharing of FHH with family members and providers Gap: providers' knowledge of FHH collection and usage: Educate providers in how to collect and use FHH in modern medical practice, including efficient, accurate collection in limited time during patient encounters (Harding et al 2019;Hull et al 2020;…”

Association of Disparities in Family History and Family Cancer History in the Electronic Health Record With Sex, Race, Hispanic or Latino Ethnicity, and Language Preference in 2 Large US Health Care Systems

“…Although some prior research has investigated barriers to collection of FHI for medically underserved populations, this has often focused on what individual patients know about their family history. 32 , 33 , 34 , 35 Differences in availability of FHI across patient subgroups within an EHR need further exploration.…”

“…Although some prior research has investigated barriers to collection of FHI for medically underserved populations, this has often focused on what individual patients know about their family history. [32][33][34][35] Differences in availability of FHI across patient subgroups within an EHR need further exploration. Previous investigators [36][37][38] have created a population health management approach that uses a standards-based CDS algorithm to identify unaffected patients eligible for genetic evaluation for hereditary breast, ovarian, prostate, pancreatic, and/or colorectal cancers based on cancer FHI available in the EHR and have demonstrated the feasibility of this approach.…”

“…Resulting gaps in documentation of FHI in the EHR could be a critical source of informative presence bias that may differentially impact different patient subgroups. Although some prior research has investigated barriers to collection of FHI for medically underserved populations, this has often focused on what individual patients know about their family history . Differences in availability of FHI across patient subgroups within an EHR need further exploration.…”

A Model for Examining Family Health History Awareness: Rethinking How to Increase Its Interfamilial and Clinical Utility and Transmission

“…Interdisciplinary fields, such as genomics, public health, and case management acknowledge the benefits of using FHHs for disease prevention and health promotion to improve client outcomes (Hudon et al, 2018; Khoury et al, 2016). Using FHHs to assess chronic disease risk is cost-effective, has greater social acceptability, and reflects genetic traits expressed through the family's underlying cultural, behavioral, and surrounding environmental factors (Sanghavi et al, 2019; Valdez et al, 2010). More than half of Americans are at an increased risk of developing cardiovascular disease, cancer, or diabetes due to their family history of these illnesses (Healthy People 2030, 2021).…”